Charity Number: 1137175

Jack K

Story written 2019

Jack was born at 38 weeks with an unknown and undiagnosed neurological disorder. He was born via C Section and as soon as he was born he wasn’t breathing. The crash team were called and whisked him off to the special care baby unit (SCBU). He had no swallow and constantly aspirated into his lungs which made him very poorly. He would stop breathing all the time and require regular resuscitation. He was on and off the ventilators and needed a tube to breathe that went into his mouth and acted like a tracheostomy tube to help him breathe. At only 10 weeks old Jack suffered his first cardiac arrest and we were tragically told we had lost him. They were pronouncing time of death when all of a sudden they got the weakest of pulses.

They continued to work on Jack and he was transferred to Sheffield Children’s hospital intensive care unit where they did his tracheostomy at just 10 week old. He still has no swallow or gag reflex and aspirates often so he will have his tracheostomy for the rest of the short life he has. He has multiple severe complex medical needs and a life limiting condition. He requires 24-7 care from specialist nurses/carers and his parents. Jack has been in and out of hospital and on and off the ventilators his whole life and is a true fighter. Jack has had 3x cardiac arrests in his life and we have had to say our goodbyes to him many times, holding him in our arms. He is such a strong little boy who fights the big fight for life.

Jack is a very inspirational little boy and despite everything he goes through everyday he still loves life. He is a very special and inspirational young boy. He has repeated chest infections roughly every month and blocks his tracheostomy every day requiring emergency intervention due to how severe his secretions and lungs are. He requires a lot of specialist care to keep him alive. His lung is being crushed from his worsening scoliosis and he suffers from low oxygen levels and his heart rate dips overnight requiring emergency intervention. He has had many operations in his life and we have been told he is life limiting and his conditions will take his life. They can’t operate on his spine as they have said he is too poorly and wouldn’t survive the operation. He is known as the miracle child to have survived to the age he has.

Update 24th November 2025

We just want to update you all on Jack as we’ve had some significant news which has hit us hard again. He had his ENT appointment in Sheffield and was scoped to see how his airway is doing. Unfortunately, the granulation growth in his windpipe has doubled in size and he has a sliver of airway left. It has now also grown skin over, so steroid drops won’t work, and he will need to be operated on asap.

The consultant has said that due to the trachy causing so much trauma to his airway, as he has significant scoliosis and how Jack moves around, there will be a catastrophic event any day now. He said he is unfortunately at the end of the road with his tracheostomy that’s kept him alive for 20 years, and it will have to be removed and replaced with a laryngectomy. This means they stitch the top of the windpipe off, remove his voice box, and leave a hole in his neck which leads directly to his lungs.

This is really hard to process as Jack has always had the safety net of us being able to change his trachy when he blocked off, but that will no longer be an option. Jack has his tracheostomy due to not having a swallow and his severe secretions and blocking off. With having an inner tube in his trachy, it is much easier to deal with emergencies as he could still breathe through his nose and mouth for short periods of time. With the laryngectomy, he will no longer have that secondary safety of an inner tube.

Due to the curvature of his spine, the trachy is causing this significant damage, which is why a trachy is no longer viable. We are all very upset and trying to process this information.

Update April 2025

Just wanted to update you. Jack’s scoliosis has significantly progressed and has now bent his airway sideways, causing his tracheostomy to create trauma and scar tissue to his windpipe, which is gradually closing his airway. They can’t operate, as they said he wouldn’t survive, and there is no suitable alternative tracheostomy for Jack’s condition. They can’t even custom-make one. His back and windpipe are continuing to curve, so eventually his trachy will pierce through the windpipe.

It’s heartbreaking. He’s in a lot of pain and we don’t know how much longer we have him. We always knew the day would come, and we are lucky he has got to 19, but now it feels much closer. It’s very hard to explain. We feel lost and so heartbroken. We don’t even know if this could all happen by Christmas or will take years. His conditions are worsening, and when his airway is blocking — which happens daily anyway due to no swallow, thickened secretions, and his airway — it’s taking longer to free it up because of the curvature and the severity of the secretions. His airway is now 70% occluded.

Update 16th May 2022 

The last couple of years have been tough with the covid pandemic and lockdown, as it has been for many but having a child with multiple severe complex medical needs on 24-7 palliative care really does make it a whole lot more scary. Last year Jack had an operation to have a jejenostomy tube properly fitted as his stomach doesn’t work properly. In March this year when they were confident the channel to his jejenostomy was well established they sniped the tube and replaced it with a button. 

Jack still continues to get multiple chest infections and coughing up blood which results in more medical interventions to get on top of it as his airway blocks regularly. Jack has worsening scoliosis (curved spine) and as his spine continues to curve his pain increases. It’s starting to crush his lungs. His spinal consultant has said that he doesn’t think Jack would survive the operation to try to straighten his spine so it’s just a case of trying to make him as comfortable as possible now on 24-7 palliative and life limiting care. This is delivered between night nurses and us, his parents. Jack is on pain management which has resulted in him on multiple pain medications to try to ease his discomfort. Sensory sessions like massage, and sensory play can also help depending on the level of pain at the time. Jack loves being pampered and enjoys foot spas, massages to hands, feet and legs and lots of cuddles. He also love it in jacuzzis and even has one in his bath at home. 

We are going through lots of problems with home care as it’s a nationwide struggle to find carers. At the moment he has NHS nurses that come every night to help us so that we can get some rest but even they have to wake us to help when he is poorly and the shifts are sporadic meaning we pick up the shifts with no sleep. Jack is having to be home educated due to no day carers and your gifts have really helped with this so thank you so much. 

We have a new addition to the family! In December we had a baby boy called Thomas and he is absolutely beautiful. Jack loves his new baby brother. Baby Thomas’s entrance to the world was scary as we had all caught covid and were all very poorly. Mum went into early labour due to covid. It was all very scary but luckily both survived. Jack was bad during covid but luckily stayed out of hospital due to his high level of care between us and his night nurses. 

Over the past year Jack has been having a lot of problems with his breathing overnight. We made his respiratory consultant aware as it seemed his airway may have been collapsing whilst asleep. They got a ventilator nurse involved and he had a sleep study at home. His co2 levels were the high level of normal and they did debate whether to increase his pressures on his overnight humidifier to try to force air into his lungs to open the airway more, acting like a ventilator effect. This is still in the process and he is being monitored closely whilst it is sorted. 

Jack got to the point where he stopped sleeping and it was making him exhausted and his breathing even worse so a couple of his consultants came together and started him on a sleep medication. Since being on it his sleep did initially improve however they are reviewing into upping this as his sleep seems to be getting disrupted again. As Jack gets older we see his condition deteriorate and it’s heart breaking but we do try to make everyday happy and as comfortable as we can. Your gifts and cards help him tremendously in this so thank you so much for everything. 

Jack’s anxiety has understandably increased over the past couple of years. He’s always suffered with bad anxiety but recently it’s been so bad he has been pulling his tracheostomy, snapping it and even pulling his gastro and jej  buttons out which causes trauma and emergencies.

Jack loves anything to do with Justin Fletcher, he loves to be pampered, sensory play but no play dough or slime please. Jack is completely nil by mouth. He loves dvds, bright colours, bubbles, Disney, wildlife especially anything to do with  aquarium and tropical fish and animals. He loves wildlife and the world.

**Please do not send any food containing gluten, wheat, dairy or sesame seeds. Connor also dislikes glitter**

Story written 2016

Connor was born five and a half weeks early after a difficult pregnancy. Shortly after this he was admitted to the paediatric intensive care unit as he stopped breathing. He remained in the PICU for the majority of his first year, whilst they tried to find out why he was having constant episodes of apnoea or complete failure to breathe. They eventually diagnosed Connor with Congenital Central Hypoventilation Syndrome, (CCHS). It was also discovered through a DNA screen that Connor has an extra chromosome, which has caused an array of issues for him. 

Over the years Connor has also been diagnosed with a learning disability, dyslexia, autistic tendencies, an anxiety disorder, migraines and Tourette’s Syndrome (Connor has facial and body tics and twitches and makes squeaking noises when he gets scared or excited). Connor also suffers from sensory processing difficulties. Connor has constant problems with extreme fatigue and widespread pain, which unfortunately mean that his life is very restricted. He spends the majority of his time in bed. 

Connor does not get many opportunities to go to activities or on outings, as he needs several days to recover afterwards and frequently gets ill whilst he is out. We currently do not know if this is due to Connor being severely affected by his Klinefelter Syndrome or whether it is, as some doctors feel, down to either M.E. and/or Fibromyalgia. 

Connor has had a very difficult year which has left him upset and depressed. He has always been as positive and happy as possible, given his conditions, so it has been hard for us as his family, to see him so down.

Update 16th July 2016

As always, we’d like to say a huge thank you to everyone who has written to Connor or sent him post. It really does brighten his days and means so much to him.

A special thank you to Sarah MC for her wonderful monthly parcels, Sarah S for her fortnightly letters, and Bev for your continued kindness and support. Connor always looks forward to hearing from you, and your thoughtfulness never goes unnoticed.

Connor has continued to have good days and bad days, but the recent prolonged hot weather has made things particularly difficult. As usual, he struggles badly in the heat, and because this warm spell has lasted for so long, he has become even more exhausted than normal. He has been sleeping much more than usual and has had very little energy, meaning he hasn’t been able to do many of the things he enjoys. Most of his time has been spent resting while waiting for the temperatures to become a little more manageable.

One positive change since our last update is that, after previously being told his medication couldn’t be increased any further, his doctors agreed to increase his main pain medication. This has helped to take the edge off some of his pain, which has been a welcome improvement. Unfortunately, the extreme heat has largely overshadowed that progress for now, as the exhaustion and fatigue have become the biggest challenge once again.

We’re all hoping that once the weather cools down, Connor will begin to regain a little more energy and be able to enjoy some of the things he has been missing.

Thank you once again to everyone who continues to think of Connor. Every card, letter, parcel and message reminds him that people care, and your kindness truly helps to brighten even his hardest days. We appreciate every single one of you more than words can say.

Update 9th December 2025

We would like to start with a heartfelt thank you to the lovely people who have recently sent Connor gifts from his Amazon wishlist. Your kindness means so much, and every parcel has brought him a little burst of happiness during what has been a difficult time. Thank you so much to Edyta Steczkiewicz, Tereza, Megan Binet, Zoe Wilson, Marie Taglang, Charlotte, and Lisa Davies. Connor is always amazed that people take the time to think of him, and your generosity truly brightens his days.

Thank you to everyone who has sent any post and Christmas cards. Connor loves them all. Sarah, we love hearing about Lily’s adventures, especially at dogwarts.

As always, we also want to say a huge thank you to Bev Higgins, Lucy Frost, and Sarah Mc, who continue to think of Connor so regularly. Your ongoing support never goes unnoticed and means more than we can say.

Connor has been struggling a lot recently, both physically and emotionally, and it has been upsetting for him when he wants to do something but his body simply will not allow it. Those moments are incredibly hard for him, and we are doing our best to keep things gentle, positive and calm while he works through these tougher patches.

One thing that has lifted his spirits greatly is that his Harry Potter themed Christmas tree is now up in his bedroom, as it is every year. The lights are glowing, his favourite decorations are sparkling, and it brings him so much comfort. He is very excited for Christmas, and we would also like to thank his Christmas elves, Joanne, Charlotte and Sarah, for sending gifts for him. They are now waiting safely under his tree for Christmas morning.

Seeing the tree each day brings him happiness, reminds him of magic, and makes the countdown to Christmas feel special.

Connor would like to wish everyone a very Happy Christmas and says thank you for thinking of him. He hopes your Christmas is full of chocolate, twinkly lights, cosy blankets and things that make your heart warm and happy.

 

Update 29th October 2025

As always, a huge thank you to everyone who has written to Connor and sent him post. It really does mean so much and always brightens his days.

A special thank you to Sarah Mc, Bev Higgins and Sarah Stefen for continuing to think of him so often and for the lovely post and kindness they send. It always lifts his spirits.

Connor has again been having a difficult few months and continues to struggle with low energy, pain and depression. Sadly, he hasn’t been able to leave the house, or even his room, since a short trip out in August. Before that, the last time he managed to go out was in early July. We are hoping he will be able to get out again soon, even if just for a short while.

Connor’s interests rarely change and he still loves all things Harry Potter, Lego and art. Although it takes much more effort now, he still enjoys building his Lego sets, especially his Harry Potter ones, when he is feeling up to it. He also continues to enjoy his drawing and art whenever his energy allows.

Sirius and Luna, his two cats, are now five and continue to bring him lots of comfort and joy. They always manage to make him smile, even on the harder days.

Connor is often asked which Harry Potter house he is in and who his favourite character is. He is a proud Hufflepuff, and his favourite character is Luna Lovegood.

Once again, thank you so much to everyone who takes the time to send post and cards to Connor. It really does make a difference and means more than you could ever know.

Update 9th October 2024

As always a huge thank you to everyone who has written to Connor. It always cheers him up. 

He has had a bad few months where he again wasn’t able to leave the house, even for a short time, for around 3 months. He did, however, get his new wheelchair at last, in August, and so the worry of it breaking and him being completely stuck has gone. The new chair also has much better leg supports and that is very helpful.

We did not think Connor would be able to go to the PostPals big weekend, but thanks to Vikki and team and the wonderful people who donated to the trip, he made it and had a fantastic time. He was so pleased to see everyone and was happier than we’ve seen him in a long  while.

Connor’s interests include; Harry Potter (super fan), Lego, Minecraft, Marvel Heroes, Drawing, animals, Marvel heroes and anime.

Update 15th January 2024

Firstly a huge thank you to all Connor’s Christmas elves. You are so kind and your thoughtful gifts are very much appreciated. Also thank you to everyone who sends post to Connor. He still does keep every bit of it.

As always, thank you to Sarah Mc, Bev Higgins, Susan Russell, Sarah Heron and Zac for regularly thinking of him and sending post. 

Connor has been much the same for a long time now, struggling with a lot of pain and fatigue and getting frustrated with himself at times for not being able to do things he wants to do. It takes him such a long time to do his drawings now, as they take up so much energy but he really wants to be able to do them. He is the same with his Lego sets, he wants to build them, but he often does not have the energy to do so, which he finds difficult to accept. As he is getting older, he is becoming more and more aware of how limited his life is, in comparison to other people his age. Connor continues to be on high dose antidepressants (as well as his main medications) and we have been told he will probably always need them, given his situation.

Connor’s wheelchair had been breaking down a lot and we were told around 6 months ago that as it’s quite old now, at some point it wasn’t going to be repairable, so Connor has been very worried while he has been waiting for an assessment for a new one, that he will be left with no means of getting about. Thankfully his new wheelchair was ordered recently, so hopefully it won’t be too much longer for him to wait now. 

Connor has been trying very hard to lose some weight recently, which has been difficult due to a mixture of the medication he takes and the fact he is predominantly bedbound and permanently needing the wheelchair. He has been finding transfers harder and harder and is hoping losing some weight will help with this. 

Connor has frequently been asked if he has any pets so wanted me to put it on his update. He has an all black cat called Sirius and a calico cat called Luna (of course he named them so it was bound to be Harry Potter related). They are both nearly 4 years old

Update 9th October 2022

Thank you to everyone who has sent post to Connor recently. He saves every letter, card and drawing and they mean a lot him.

Thank you to Post Pals for Connor’s summer smile. He loves his Harry Potter Lego sets. He’s not felt up to doing them yet but as he collects them, he’s extremely happy to know when he is up to it, he can add them to his collection. Thank you to everyone who has donated to the summer smile funds.

Thank you to Bev for Connor’s Lego set, thank you to Sarah M for the fun rainbow package. Thank you to Ellie for the lovely Harry Potter stationary set and as always, thank you to Susan Russell and Sarah Heron for the regular post that you send.

Connor has had a very quiet summer. Unfortunately, we didn’t manage to get him out of the house at all for 8 weeks. He was just not feeling up to even a short trip outdoors. His wheelchair has now had the tilt function added, so hopefully when he does feel up to going out, this will help when his energy levels rapidly drop. We’re currently awaiting a decision from the OT’s over which hoist they believe will be most suitable and how long it will take to source it, to help Connor when he’s unable to transfer into his wheelchair without extra support.

Update 4th July 2022

As always, thank you to anyone who has sent any post to Connor. Thank you to Holly for the Marvel books. Thank you to Jen for the blanket you sent. Thank you to Lucien for your letters and as usual thank you to Sarah Heron, Sarah M, Bev and Susan for always thinking of Connor.

A huge thank you to Vikki, Dawn, Steve and Jill for all of your hard work organising the Chessington trip and thank you to Allied Mobility for sponsoring Connor’s room there. Connor would not be able to go to somewhere like Chessington without a room to rest and stay in, due to his energy levels being so low and him finding being in busy places particularly draining. Being able to go and see the animals, then rest and sleep, and then go to the sealife area the following day was brilliant for him. It was also lovely for him to spend some time with Eleanor G, as they have known each other for a long time now.

We have finally managed to get Connor’s wheelchair adjusted, as he has grown significantly since he got it four and a half years ago and he was suffering a lot of discomfort when using it for any significant length of time. Hopefully he will find it less painful now. He is also awaiting the addition of a tilt function to it, but that will take a little while longer to be done.

Update 25th March 2022

Thank you for all of Connor’s birthday cards, gifts and well wishes. He has never had so many birthday cards.

Connor has been struggling a lot with his energy levels, even more so than usual, which has led to him not being able to enjoy his hobby of Lego building much, unfortunately.

We are currently in the process of making our garden more accessible for him, in the hope that we can get him out in the fresh air a little more this summer.

We are also slowly rearranging all of his Harry Potter collectables (including the ones he got from his Post Pals elves), to make his surroundings, even more, Harry Potter themed than they already are. It really is his absolute passion. Thank you so much to Laura for the wonderful signed Luna Lovegood photograph. It is now framed and on display. Connor was very emotional when he opened it.

Update 5th January 2022

Firstly a huge THANK YOU to all Connor’s Christmas elves and anyone else who sent post to Connor and me. Connor was totally over the moon with the gifts he was sent and kept saying how amazing they were. We really appreciate the thought that went into all of them.

Also a huge thank you to Bev, Susan Russell, Sarah Mc and Sarah Heron for your constant happy post.

As always, thank you to the Post Pals team, especially Vikki, Dawn, Steve and Ally for all your hard work.

Update 29th August 2021

A huge thank you for all the post sent to Connor recently. An extra special thank you for those who regularly think of Connor. Thank you Susan Russell, for all your letters and for the wonderful basilisk ornament. Thank you Bev for your continued thoughtful post, and the amazing Fawkes lego, you always seem to know what will make Connor smile. Thank you to Sarah Heron, for her fortnightly post. Thank you to Sarah Mcclilloch for the wonderful Marvel name plaque and of course a huge thank you, as always, to the postpals team for everything you do, and organise, particularly Vikki, Dawn, Steve and Ali.

As a lot of people know, Connor is obsessed with Harry Potter and he frequently gets asked questions regarding this, so he has asked me to answer the most common here, as he can’t reply to a lot of the post. He is in Hufflepuff house, sorted by the Pottermore/Wizarding World quiz both when he was younger and when he wanted to check if he’d changed when he hit 18. His all time favourite character is Luna Lovegood. His favourite movies out of the set are The Deathly Hallows 1 and 2, but he loves them all. He does also enjoy the Fantastic Beasts franchise and would love to have a pet Niffler.

Connor has been recently been an in patient in hospital having had a severe kidney infection and UTI, he was extremely unwell and needed various treatments some of which he has had to continue at home. Although he’s never liked being in hospital, he found this time particularly difficult as he was on a busy adult ward and although we got given permission for myself to stay with him, due to his Autism and learning disabilities, there wasn’t really proper provisions set up for this either and so this upset him too.

In general, Connor is barely able to leave his bed at all at the moment, let alone get out of the house. Thanks to being able to access video chat, he is at least able to keep in touch with a couple of his friends. He is still taking a high dosage of the antidepressants and it looks like this will need to be ongoing. Connor really does appreciate every bit of post that he receives.

Update 21st June 2021

As always, a huge thank you to everyone who has sent Connor post, he really appreciates every bit he receives. He tries to reply to people who have given a return address, when he is up to it, but unfortunately he has had a lot of longer periods of being at his worst in the last 6 months, which has meant he’s not had the ability to send much.

Postpals has been a tremendous help to Connor over the years and he would also like me to thank Vikki, Ali and all the other volunteers for everything they do, as well as everyone who takes the time to write to him.

Update 30th July 2020

A huge thank you to everyone who has sent Connor post. His depression got so bad that he was put on to antidepressants in February and has had the dose raised twice since. These have seemed to help a little but the post that’s sent really does put a smile on his face.

As with a lot of others, Connor hasn’t left the house for 16 weeks now, unfortunately  for the majority of that time he has had to stay in his bed, as his fatigue and pain have been so bad.

Whilst every bit of post is greatly appreciated, Connor wanted to say an extra thank you to Bev, for always thinking of him, to Susan from America, for all the post she sends, to Gwendoline and everyone involved in the special book and to all the ladies of the Postpals Sewing Bee, for the absolutely phenomenal Harry Potter quilt you made for him.

Update 2nd October 2019

Connor would like to thank everyone who has sent him post, it is very appreciated. Extra special thanks to Bev, Penny and Susan for being beyond amazing!

Connor has been suffering very badly with pain and fatigue during the summer.Over an eight week period, he only left his bed a few times for hospital appointments and as he wasn’t really up to going out, these appointments just depleted his energy levels even more. Being in so much pain is only adding to his low mood. He also recently discovered that some of his bowel issues and chronic stomach pain is due to him being extremely intolerant of wheat, gluten, dairy and sesame seeds, so he is having to get used to a new diet.

Connor really enjoys getting his post and he does try to reply to people when he is feeling up to it, so thank you again to everyone who sends him post.

Please only send halal or vegetarian items if sending food

Story written 2015

Amina was diagnosed with cystic fibrosis  (CF) at 12 months old after a long struggle. She was not tested in the heel prick, as it was introduced the year after. It began with a cough and ended with Amina being in intensive care for three months. We had no idea she had CF and neither did the doctors. After three long months of guessing, we finally got the diagnosis that changed all our lives.

Amina has taken CF in her stride. She is on 17 tablets a day not including the 30-odd Creon she also has to take daily. Amina also has nebulisers and daily physiotherapy. Amina has just been diagnosed with CF diabetes and now has insulin every night as well. Amina is also on overnight feeds to keep up her weight gain.

She has never let any of this stop her and participates in everything at school, even though she misses a lot of it due to having IVs for two weeks in hospital every three months. Despite all this she is always smiling.

Amina’s sister Rida is also a Pal and has her own page.

Update 11th July 2026

Amina has had a tough year. She has had numerous hospital admissions, most of which have gone wrong in one way or another. Either medication hasn’t arrived, cannulas have blown, or allergies have caused problems.

She had internal bleeding this year and had to have veins clipped, which left her uncomfortable for quite a while afterwards. Then her port failed, so they booked her in for a new one. Before that, though, she had two admissions where they couldn’t access a vein, so she couldn’t have a cannula. They then tried numerous times to insert long lines but were unsuccessful. Eventually they just used cannulas, but the admission ended up lasting three weeks instead of two. She came home covered in bruises.

A new port was fitted and subsequently stopped working. Now they’re deciding whether she needs another one.

We had a family holiday planned to Pakistan, but that was cancelled because of the war, so it’s all been pretty crappy.

Post really cheers her up. Thank you, Sarah, for your continued amazing post. Thank you, Post Pals Plus, for keeping her on. It helps so much.

Update 31st October 2025

Amina has joined the new Post Pals Plus section.

There has been another breakthrough in the world of cystic fibrosis, with another miracle drug being released, but again Amina’s genes mean she doesn’t qualify — so we wait. She has just had a difficult admission of almost four weeks, and as winter approaches, it will probably get worse.

She’s trooping on and getting through it.

Update 28th February 2024

Amina has now turned 18 and will be moving on from post pals. Your post-wether it was a card, letter or gift has got her through some dark times and we cannot express how grateful we are for the support over the years.
My family would like to take this opportunity to let you know how appreciated you all are and please never underestimate the power your post has on these children.
Thank you and God bless.

Update 31st October 2025

There has been another breakthrough in the world of cystic fibrosis, with another miracle drug being released, but again Amina’s genes mean she doesn’t qualify — so we wait. She has just had a difficult admission of almost four weeks, and as winter approaches, it will probably get worse.

She’s trooping on and getting through it.

Update 26th March 2021

Amina is doing well physically but is struggling mentally with lockdown and taking so many treatments. She like the rest of us no doubt just wants everything to go back to normal.

Update 6th February 2021

Amina is struggling with lockdown. She will be 16 in March and is disappointed she can’t have a big party. She’s on extra antibiotics and heading towards IV’s.

As ever thank you everyone for all cards, letters, presents and emails. You brighten our day

Update 20th August 2020

Amina has many hospital stays and and different appointments. Even during lockdown she was doing video appointments a lot. She keeps growing bugs and is being put on new medication or extra antibiotics, which can make her feel sick. She’s still having IVs done regularly and nurses are coming out to flush her port regularly.

She has a MRI coming up as well as another appointment. As she gets older she’s finding it harder to deal with the fact that she’s different to her peers, which makes things harder. She misses a lot of school and manages to catch up, but by that time, it’s time for another tune up and to miss more school.

Update 4th December 2019

Amina is coughing again and the weather isn’t helping. She’s on extra medication to clear the cough.  She has an AA coming up which takes up the entire day. She’s got exams at school too, she’s taking everything in her stride. We are very proud of them both.

Huge thank you to everyone for all the post. Rebecca Butler, Quangle Wangle,Geraldine, Carol Hart, Beverley Ann Rudd, Jenny , any families and the many I’ve missed too. Thank you.

Update 7th October 2019

Amina has an ongoing dry cough. It seems to be getting wet and also she’s having tummy issues and is constantly tired. She’s now off school because she’s just so tired that she can’t do anything. She will be needing IV’s soon so that will be another week or 2 off school and now she’s in year 10 she’s upset about falling behind.

As always I’d like to thank everyone for all their post Rebecca Butler, Quangle Wangle, Carol Hart, Beverly Ann Rudd, Faye Walker, Geraldine Entwistle, Tasmin and Ellie Ewbank just to name a few. Your post and well wishes has kept us going and means more than you’ll ever know.

Update 21st March 2019

Amina healthwise is doing very well. Last clinic she was told she was well and didn’t need IVs. She misinterpreted this as she was ‘cured’ and no longer has CF, which was a huge blow when we sat down and explained it wasn’t something that’s going to go. She’s taken it in her stride and just continues. She’s due to have a CGMS, which is a small needle in the tummy which monitors blood sugar levels constantly. This stays in for 5 days and they will adjust her insulin according to the results.

As always I’d like to thank everyone for their post. I don’t want to name 1 person because I’ll forget others and that’s not right. You wonderful people all know who you are.

Geraldine Entwistle, Mark Marx, Carol Hart, Sue Russel, Faye Walker, Quangle Wangle,Bev Higgins, Beverly Ann Rudd and just everyone, so thank you.

Update 1st November 2018

Amina had an admission in September. She missed the start of school. Had a broken gastrostomy, which then became infected causing severe discomfort and pain. It was removed and the decision made to leave it out. She may have 1 more admission before xmas and now really struggles because she hates missing school.

Rida has had a horrendous time lately. Her wounds have been so extensive to the point where we have been unable to  bath her for weeks. It’s been extremely difficult to watch her cry in pain. To add to this she’s had unexplained back pain and chest pain which nobody can understand and has had so much time off school.

She’s struggling to walk and her team want her to start using a wheelchair to make her more comfortable. This will benefit her, but will be extremely difficult for us as parents to see our 10 year old in a wheelchair.

I’d like to thank everyone single person for their post. All the letters, cards, gifts everything. The fact that you lovely people take time out of your day to put a smile on my child’s face means more to us as parents than anyone can possibly know. Thank you.

Update 18th July 2018

As always, a huge thank you to all those that have sent post. Amina is struggling with the heat and is losing a lot of salt through sweat. She’s drinking so much during the day but come 7.30 p.m. she’s ready for bed. She took part in sports day and came second in the shot put event. We attended the Post Pals party and it was amazing.  Amina loved running about and doing crafts at the table with Lyn Clifton and her daughter.  Thank you to Vikki, Dawn, Steve, Ally, Becci, and all the volunteers who helped make the party happen. Thank you for all post that’s been sent. It’s so much appreciated.

Update 2nd June 2018

Well since the last update we’ve had more admissions, surgery, holidays and then lo and behold more admissions. In February she was admitted and her peg broke, requiring urgent surgery to have it replaced. Then after 2 weeks we came home and had a holiday where unfortunately I became very poorly,so it put a massive dampener on things. Came back from holiday in April and Amina had a horrible vomiting spell and was wheezing, struggling to breathe and lethargic. We took her to clinic where she was admitted and put on IV’s and also steroids. They don’t usually like to do this. She was on oxygen for 2 days as breathing was a struggle and SATs were below what they should be. Slowly, over 2 weeks, she picked up and we are now home. We’ve managed to enjoy some of half term, but it’s taking time to get over all the illness.

Thanks going out to every single person. Ellie, Beverley, Bev, Sylvia and Roy, Anna, Wendy and Charles, Rebecca, Badge, Gaynor and Ginny, too many to name, but all those who have asked or sent post, we are really so grateful, as it allows a sense of normality.

Update 1st October 2017

Another admission for Amina and leaving Rida at home has left both girls distraught. Amina is currently on day 9 of IVs. She is obsessed with Harry Potter.  Her collection of stationery is still growing too. She’s doing the O2 climb, so is looking forward to that.

Rida has had numerous appointments including two cancelled as we couldn’t be in two places at once. She has two very important ones in December. Her class has started swimming and she goes with them but sits on the side and watches … Yet another reminder of how she’s ‘different’. She is an avid Disney fan and loves Care Bears.

As always, massive thank you to every single person who took the time to send cards, letters, emails, and gifts. Some names: Ellie, Wendy, Beverly, Bev, Dawn and Steve, there’s so many I can’t name everyone, but thank you.

Update 6th June 2017

Amina had an extremely tough two week stay in hospital where the medication made her vomit too much. She spent the first three days sitting in the bathroom vomiting and lost two kilos. This is a nightmare for CF kids. Weight is always an issue. As a result she’s been put back on overnight feeds and is unhappy as it feels like a step backwards. She worked so hard to get her weight up over the years, but they have said it will be reviewed in clinic and if it’s gone up then her feeds will stop.

Thank you for every last letter, card, postcard, picture, photo gifts big or small. They make more difference than ever. Thank you for Amina’s smiles box and other gifts and cards sent to hospital and my things too. These are what get us through.

Update 30th April 2017

Massive thanks to the Post Pals team for the Extra Smiles and In Kind Direct. To Wendy, Bev, Bethany, Vicky and so many others. Without you I don’t know how we would see half the smiles we do.

Amina has admission for two weeks in the next few weeks. This will be hard as she hates it now and really gets upset. Not to mention Rida getting upset because I’m away with Amina. It’s harder as Amina is in isolation and can’t leave her room for two weeks.

Update 4th January 2017

Amina was in hospital in September for two weeks and again in December. The December stay was a huge battle as she was constantly being told different things about isolation. She ended up confined to her room for two whole weeks. This was traumatic for her as well as me. Isolation is awful. She stressed herself out so much, she lost two kilos in weight and refused to eat the hospital food. It was a struggle to get some weight on her. She’s beginning to acknowledge her CF now and it’s becoming harder for her to accept that she has to spend so much time away from school. This was her first admission since starting secondary school and she was very aware she was missing things.
We have another one planned for March but I’m hoping we can do home IVs.

I’d like to thank each and every person that sent letters, cards, gifts, big or small over the holiday period. Christmas was amazing and they had so many gifts. It’s overwhelming how much people who we have never met can care. Extra thanks to Vikki for this amazing page and group.

Update 4th November 2016

Amina is due for IVs again. The doctors want to hold out for as long as possible so they have said that she will need to be in by mid November. There is currently a bug on the ward and it is shut for admissions. She is coughing and having odd vomits as well. Her blood sugars are also playing up and it’s becoming difficult to get a balance with them and her feed. Thank you to everyone who has sent post to both girls. Anything no matter the size makes so much difference. The smiles are priceless.

Update 3rd October 2016

Amina is beginning to cough and is becoming aware that she may need an admission yet again. She really is not looking forward to this as it will be her first from secondary school and she’s worried about what her new friends will think. She also is worried about falling behind. It’s going to be a tough few months.

On a thank you note, I’d like to thank each and every person for all the amazing e mail, letters, notes, cards and gifts. Especially to Wendy Woo, Ginny and Jessica for their numerous gifts.

Update 5th August 2016

Amina is again going into hospital for two weeks of IVs on 15-16 August. She’s now allergic to three so even the doctors are struggling to find one which covers the bugs she is growing. The one they are thinking of won’t enable us to go home, so we will have to stay in for two weeks.This might be an issue as Rida will still be fragile, so will need me. She is gutted as it’s her aunt’s (my sister’s) birthday on 18th August and she won’t be able to go. She has been having tummy pains and hard poos, so they think it may be the beginning of bowel problems.
Her medicines have been changed so she has now hit the ‘it’s not fair, I don’t want to take them’ stage.

Update 8th July 2016

Amina is very nervous as she is starting secondary school soon. She had an induction and loved it. She is coughing a little bit, but keeps getting tummy pains and is on the toilet a lot. This is taking its toll on her and she is getting tired easily. Unfortunately bowel problems come hand in hand with CF.

I would like to thank each and every single person for their gifts, letters, cards and e mails. The look on the girls faces is priceless and it wouldn’t be possible without you wonderful people. Thank you.

Update 1st June 2016

Amina has finally been given a date for her surgery which is scheduled for tomorrow at 1.30pm. The hospital have called in a surgeon from another hospital to help perform her operation. Needless to say, Amina is absolutely terrified and her family will be very relieved to have the surgery out of the way. Rida is struggling also, as she is very concerned for her sister, as she knows only to well about having operations and being in hospital.

Update 20th May 2016

We’ve just got back from clinic and have been told her port has snapped inside her chest, due to high risk of infection she now needs emergency surgery. We have been called back on Monday. Her feeding tube has also stopped working and she will need to have that replaced too. She’s terrified and has spent ages crying.

Update 4th May 2016

Amina is ok, but I can see some new cystic fibrosis related symptoms occurring. She may have a bowel blockage and this is causing her extreme pain, she is spending ages on the toilet and struggling. It’s so hard to watch and not be able to do anything. It is making her very tired and she never seems to have any energy. There is also something underlying as she is always cold and wearing many layers. She is due to have her feeding tube replaced, her port replaced and some hearing tests. On top of this she has her SATs coming up too. Thank you to Post Pals for the butterfly project. They are really enjoying that! Also thank you for the make up and the dream catcher and jewellery gift from a pal.

Update 5th April 2016

Amina is in hospital having IVs. It’s very difficult, as she’s had another reaction to something and is covered in huge bruises all down her legs. This has really upset her. To make things worse, due to her bug she is isolated and not allowed to interact with others, or leave her room for two weeks. We are slowly getting there.

Update 3rd March 2016

On the 1st of Feb the girls unexpectedly and suddenly lost their grandad. This was devastating and we had to drop everything and catch the next flight to Pakistan. It was a very somber atmosphere and something they had not experienced before.

Amina is now coughing and awaiting admission. Now that she is older and more understanding she is beginning to rebel against her condition. It’s getting harder for her to accept that she is different and has to miss so much that her friends do. She is so brave and doing very well but losing her grandad has hit her hard.

I’d like to thank Ginny and Wendy and everyone else for all the post, cards, gifts, e mails, and massive thanks to Sarah Torode for the extra smiles boxes and the balloons.

Update 22nd February 2016

We just had to make an unexpected trip to Pakistan as the girls’ granddad passed away. It was so sudden and shocking, as he wasn’t even unwell. Now we are home, they are even more upset because they say granny is on her own. They are devastated and the extra smiles boxes really could not have come at a better time. They managed to put a huge smile on their faces. Amina has a hospital stay looming, so it looks like it’s another 2 weeks away….except this time to hospital. Massive thank you to Ginny, Wendy, Anne and the school in Cyprus for the presents. Also to everyone who wrote an e mail, letter, card etc, thank you all so much.

Update 21st January 2016

Amina is doing ok, but she is aware she will need surgery on her next admission and is very upset about that. It’s something that cannot be avoided, and we are trying not to dwell on it too much until the time comes.

On to the thank yous. I don’t even know where to begin! I would like to thank each and every single person for all their letters cards, gifts, e mail and messages.

Update 5th January 2016

Massive huge thank you to each and every single person that sent cards, letters, presents and even e mails. You guys seriously have no idea of the smiles you are making possible. Wendy is our regular sender, so a huge thank you to her and also Claire. There are so many I don’t know where to start.

Amina is doing well, although this never lasts long, but I’m hoping it will, as her hospital admission at the end of December was horrible.

Update 3rd December 2015

Amina is very unwell at the moment. She is coughing and vomiting and I really am trying to get her better, so she isn’t in hospital over the festive period. She’s very upset as well and crying a lot. Her sister Rida is very unwell too, so to sum up we have two very poorly and sad children at the moment. Saying this, I am hoping to take them both Lapland on Wednesday, so please send positive vibes they are well enough to go.

Update 2nd November 2015

We are in the middle of moving house and all the dust is getting to Amina. Poor child is coughing away again. We are hoping extra physiotherapy can shift any problems she has.

Rida is having an extremely rough time with her legs. The wounds are extensive and are requiring daily dressing changes. She is in awful pain, when the dressing change occurs but once it’s done…the smile is back.

Please note: the address where the post used to be sent has changed. This is now 24 Dawson Close, Woolwich, London SE18 7PL

Update 25th September 2015

Amina is very unwell at the moment. We are waiting on a bed in hospital so she can start her IVs. She’s coughing, vomiting and spiking the odd temperature, so hopefully we will get a bed soon.

It’s Rida’s birthday on 8th October and it seems more than likely we will be in hospital with Amina during this time. There’s no way around it and we will have to celebrate afterwards.

We have been given a new house so should be moving in the next week or so. I will be running backwards and forwards from the hospital to the house, as I want the girls’ room all decorated before Amina comes home, as a surprise.

Lastly, there is still no improvement on my hearing and life is very difficult at the moment.

Update 6th September 2015

Amina is unwell and is coughing. She is trying to put off going into hospital for more treatment as school has just started and she wants to be with her friends. However we are heading that way unfortunately, so it seems we will soon have (another) two week admission.

Thank you for the girls’ post.

Update 4th August 2015

We have been away almost all of July, but we are now home and Amina is due a hospital admission any day now. It seems like only yesterday she was in hospital and we still haven’t even recovered from our jet lag yet.

Update 17th June 2015

Fantastic news! We got a call late yesterday evening saying all results are clear and Amins can come home! So I went and picked her up last night and I don’t remember the last time I slept so well! So happy my baby is home!

I want to say a massive thank you to Sharon and the we love paper cutting group. Also to Post Pals for Amina’s princess game and the hair accessories lollipop which is now safely packed away to come on holiday with us.

I love you all lots for the smiles you put on my girls’ faces. Words can’t describe the meaning and importance of what you’re doing for these children!

Update 16th June 2015

Amina’s admission usually last two weeks but unfortunately she took a bad turn towards the end of it, by spiking temperatures of up to 40. She’s still in hospital and is now on day 17 with no news of when she’s coming home. She’s also in isolation. Rida is really missing her sister now as they have never gone this long without seeing each other. I just want her home now. Even I haven’t been away from her for this long.

Update 4th June 2015

Admission started on Saturday and poor Amina had an awful reaction to the medicines. She was covered in huge bruises. It was also a huge struggle to get a remote for the TV so I could use subtitles and I ended up staring at the TV with no understanding for a good five days, then on Wednesday I broke down and had to come home (with Amina) for the night. Now she’s gone back with daddy and I’m having a few days out, but will go back soon.

Poor Rida has been home and now wants Amina and mummy back home. However, now that I’m home she’s a bit better. Onwards and upwards, hopefully!

Update 30th May 2015

Gigantic thanks to Wendy for the banners to go in their room, and especially all the care and consideration she took to ensure they are suitable for the girls! Thanks also go to Post Pals for the Wreck Journal and thank you for Rida’s dolly which she adores!!

Update 26th May 2015

Amina is very poorly at the moment. She has an awful cough causing vomiting and on top of this she is getting nose bleeds, headaches and temperatures. We have been waiting for a bed to go in to hospital and start her IVABs since Thursday. Rida is well, but is upset seeing Amina unwell. Times are hard and frustrating at the moment and I still have no hearing.

Update 2nd May 2015

The girls are doing ok this month, although we have had some very bad news. I have unfortunately lost hearing in both ears and am now totally deaf. Doctors are baffled as it happened over 10 days. The girls are coping very well and at the moment we communicate via writing and a board. Amina writes what she wants to say and Rida just uses hand gestures. I am still having various treatments so hopefully it comes back. It has made things extremely difficult in terms of communicating with Amina and Rida’s medical professionals.

Amina is due to have a hospital admission for two weeks very soon. She is very upset as this will also involve an operation. Let’s hope it goes well. Amina is not looking forward to the admission and my loss of hearing has made things worse. She knows she will be answering most questions as I am totally unable to hear.

Update 5th April 2015

A massive thank you to everyone that sent birthday cards, letters and gifts. There are too many to name but you all know who you are and the smiles you put on Amina’s face are ones that money cannot buy.

Update 24th March 2015

I just want to say a huge, massive, gigantic thank you to each and every one of you who wished Amina a happy birthday, sent her a card or a gift! She had a fabulous party and we have one very pleased 10 year old!

Update 14th March 2015

A huge thank you to every single person who has sent Amina a birthday card and gift! The look on her face is priceless! Big thanks too for not forgetting Rida and making sure she’s also getting bits and bobs.

Thank you so much.

Update 25th February 2015

Rida had surgery on her hand on 10th February and 17th February. Then on 24th February she had another surgery and rather than taking 5 teeth out as planned, they took out 7!

My CFer, Amina, started coughing madly and so was admitted to our local too. Now that Rida’s had her final surgery though, we are waiting to be moved to Brompton. It seems Amina could be in hospital for her 10th birthday too!

Here’s my routine for at least the next two weeks. Take Amina in to hospital every night for 9pm to have 10pm IVs, go to sleep, have 6am IVs, wake at 8am to drop her at school, pick her up at 3pm to bring her to hospital for more IVs, go home, then come back at 9pm and do it all again!

Safe to say February has been a very hard month for us, but one thing the girls have had to look forward to is their post from Post Pals. We love you all!!

Update 1st February 2015

Post Pals is doing a fantastic job and whenever we get post the girls come running and say ‘mummy is there anything from Post Pals!’ Lots of love and praises to you guys!

Update 26th January 2015

I just wanted to say the girls have started getting post and I cannot tell you how happy they are! It was so nice to see them with such huge grins every time they got something!

We have a very challenging couple of months coming up. Rida has surgery on her hand on the 10th February and then needs to go back once every week for three weeks in order to be put to sleep again and have her dressings changed. She will also she will have 5 teeth removed.

During this time Amina has her IVs admission and it will be very hard to juggle both sets of admissions, especially as their respective hospitals are at the other end of the city from one another. Wish me luck!

Story written 2014

Bethany first became seriously ill at the age of 15 months when she suffered from a ruptured intestine which was unnoticed and led to peritonitis. Following surgery to rectify this at Great Ormond Street, Bethany became one of the youngest patients to have her appendix removed at only 17 months.

In the months after Bethany’s operations she continued to suffer excruciating pain and suffer from severe distension of her stomach. Initially this was an allergy to milk, but due to the way Bethany’s combination of conditions attack the body it became apparent that milk allergy was only the beginning. In January 2011 Bethany’s doctors decided to feed her via a feeding tube for six weeks in order to allow her body to rest and then try to reintroduce food on a piecemeal basis. Unfortunately, three years later, that has still not been possible due to her suffering allergic reactions to any food that enters her stomach. Bethany’s body decided it didn’t like the feeding tube or button devices inserted and in two and a half years she went through several buttons and two gastric pegs. Whilst investigating the cause of this it was discovered that Beth also has dysmotility, meaning her stomach doesn’t empty quickly enough and the easiest way for it to leave the body was through her peg site causing continuous infections. The decision was made to feed her via a jejunostomy, so now the feed bypasses her stomach directly into her bowel for 22 ½ hours a day.

After intensive testing and countless visits to specialists, Bethany was included into a research clinic at Great Ormond Street into Ehlers Danlos Type 3 and the connection with gastro disorders. As a result of the testing it was discovered that Beth actually has Type 6 Ehlers Danlos of which there has only been 60 reported cases of worldwide and of those 60 Bethany is the only one that Great Ormond Street are aware of who has the stomach problems as well.

Bethany is currently in hospital as she is now having to have TPN (fed IV).

Despite all of her health problems which leave her in pain and spending lots of time in hospital or confined to bed, Bethany will always manage a smile and a few select wise words to cheer you up when you are down. She is entirely selfless and is always looking for ways to help fundraise in order to try and make other people’s lives as comfortable and enjoyable as they can be.

Update November 2025

Beth is still struggling with pain and also issues with her peg & Jej  which we hope UCLH come up with a plan
Beth is struggling with adult services as once you leave childrens it’s like starting over again but the consultants she does see have been really good
Beth has loads of appointments coming up so lots of travelling back and forth to London which she struggles with
Beth has to have an iron infusion which is happening Friday
Bethany still loves cooking/baking also love Lego which is now taking over the house

Update 26th October 2022

Bethany still is struggling with all her issues. She now has a fabulous new consultant who listens to Beth slowly. She’s having more tests done as her IGE level is sky high but they don’t know why. They have changed her TPN recipe and is only on lipids once a week because of her liver as it’s suffering, she will be having a biopsy done to see how much damage has been done. She is still suffering with being sick specially when she over does things. This could be just doing her cooking lesson or her media studies then it leads to her staying in bed for a couple days. No matter what she does she suffers her body just doesn’t like her doing things.

Since lockdown has been lifted she has had so many appointments. She’s now changed to adult services and her new gastro doctor wants to see her every month as she has so much going on.

Beth should finish her media studies by Christmas which then she can start her photography course.

Update 7th May 2021

Finally got round to writing an update to you wonderful people. We have kept reasonably quiet during the last few months as there has been a lot of things going on as there are in any household, but I will try and outline Beth’s 2021 so far.Sorry it is a bit long winded.

The new year started with a bang. Absolutely typical that the first new year in 4 years that Beth has not been in hospital on the big night, and we were shielding and unable to do anything.

In the first couple of weeks of January everything was going quite well until the 15th when Beth woke early in the morning (Rarer than unicorn wee) complaining of feeling sick and a bit cold. On taking her temperature we quickly lined up her IV paracetamol in an attempt to lower it as it was 39°+ (which is a prime indicator for sepsis) and crossed our fingers. When it had only dropped by 0.5°C we contacted our local hospital and started her sepsis protocol. As usual the staff at Basildon hospital were on the ball and had her IV medication drawn up ready and she was on strong antibiotics within minutes of arriving on the ward. Due to her history with sepsis,arrangements were made to transfer to London where a higher level of care could be given if necessary and eventually at 23.30 the ambulance arrived to transfer her. (Beth had been awake since 06.00 which for her is already a long day) by the time we arrived on the ward in London and were checked in and medication sorted it was now 04.00 and sleep was badly needed.

On admission to Basildon both Bethany and Dad were screened for the dreaded covid which we were sure would be negative as Beth was shielding. The results came back on the lunchtime saying that Bethany had tested positive for covid and the period of isolation trapped in a hospital room began. Due to Bethany’s long-term use of steroids they had to give her a high dose of hydrocortisone to prevent her body going into shock and blood tests showed that her vitamin D levels were low, so she had to have an injection. Thanks to these and a huge dose of luck Bethany remained completely asymptomatic of corona virus and appears to have escaped any of the long-term effects.

After 6 days of isolation, it was decided that Bethany was showing sufficient signs of improvement from the sepsis and as still displaying no symptoms of covid that she could be transferred back to Basildon to complete her treatment. Happy that we had avoided having to put Beth through the pain of having her central line pulled and a PICC line inserted into her arm one last inspection of the sight was requested. During this inspection it was noted that while the site itself was doing ok the cuff around her central line which helps keep it in place had come away from the body and the line would have to be pulled anyway.

The line was changed on the Friday after a week in hospital amid scenes reminiscent of monsters inc. (with all the PPE required due to covid) and another couple of nights in London were needed.

We were finally transferred back to Basildon and then discharged on the Sunday to continue the IV antibiotics at home.

Beth had her first dose of the vaccine in mid February but unfortunately, she reacted to it causing her pancreas to flare, meaning another three days in hospital. Whilst in hospital they carried out an MRI on her head to check to see any signs of what was causing her worsening tremors. They found something “unusual” on the scan described as a small “anomaly” that they had sent to UCLH to get their opinion, so there was a few weeks of nervous waiting and worrying, doing our best not to believe Dr Google and the doom merchants.

Fortunately for want of a better word they decided the growth was a benign hamartoma which could affect the site to the right eye. As Beth has not had any symptoms and she is so complex it has been decided to monitor it and so long as there is no alteration in size or shape, they will just continue to monitor her regularly. She is due another MRI next month and then a decision will be made on the follow up

Beth now 17 has got one of the toughest decisions of her life to make as there are two main schools of thought to end her three long years of steroid use. One is to reconnect her colon and hope that stops the bleeding and the other is to remove the colon. They both obviously come with pros and cons along with risks and a lengthy procedure and hospital stay regardless of what decision is made. It has been made clear to Bethany that despite her best efforts that due to issues arising with her pancreas every time we try, they are not going to try feeding her into the gut again so she will now be fed by Parental Nutrition into the vein for the rest of her life.

Bethany has also missed a year of college and her GCSE exams but still managed great scores in the teacher assessments that were done instead. Due to issues with arranging courses and covid she must now try and find a course and secure the funding so we can help this amazing young lady fulfil her potential to the absolute full.

Thank you very much for reading and we will not leave it so long next time, so the post does not have to be so long. We are hoping as restrictions ease to organise some fundraising activities and events, so please watch this space.

Update 20th August 2020

Bethany is struggling day by day with pain, also being very tired. Beth has had some appointments during covid (lockdown.) One was to change her Hickman line due to cysts being around and on it. so it was changed to a double lumin ,so her picc line could be removed, as she is now on IF medication . Being on IF medicines has helped her pancreas levels to the point of them being normal, which is fab, so hopefully not so many flare ups. Beth is still bleeding so was put on a higher dose of steroids, which has made a difference, so there has been talks about another medication, but this can cause issues with her pancreas. We do have a telephone meeting with her pancreas specialist to discuss her procedure and if she could try this medication, as steroids are now affecting her body. Beth is collecting her GCSE results today 20th August. She only did 2, Maths and English, but she has got all her food hygiene certificates and more to do with food, also her Makaton levels 1 & 2 .

Lockdown was hard for us all, as Beth had only come out of hospital a week before lockdown, so didn’t really get to see anyone or do her get together with her friends for her 16th birthday. Hopefully soon she be able to do something .We are slowly getting to somewhat normal as we can

Update 20th April 2020

Where do I start, this year has been horrible. In January Beth became very poorly with pancreatitis and ended up in hospital for 3 months. She had to celebrate her 16th birthday in GOSH. She has had to come home on a few IV medicines, as every time we put too much in her, it causes horrendous pain and being sick and it also makes her pancreas levels rise . Beth should have had a procedure on her pancreas, but with covid 19 it was cancelled due to no intensive care beds and they didn’t want to risk it, just in case she needed one.So this has been pushed back until August depending on covid. Beth is still bleeding so she’s still on steroids which makes it more high risk for her during this time. Whilst we’ve been on lockdown she’s been helping with baking and cooking. She also still does school work with her tutors through zoom. Only one she really misses is cooking, as she’s not allowed to leave house or have people in, but they are doing food hygiene level 3 over zoom, so this should be competed in a few weeks hopefully, then she will do a test.

Also during this flare Beth can not tolerate drinking water or having ice cubes it cause so much pain and sickness. This flare was the worst we have seen, had to have lots of corrections, but she just keeps smiling.

Update 1st October 2019

Sorry for the delay in updating, it’s been a stressful few months. In July Beth ended up in her local hospital due to her pancreas flaring. This has happened about 15 times now but this time was bad, she gained 8kgs, very puffy, her bloods were all over the place. After a week in local she was transferred to ITU at GOSH, thankfully it was just for 24 hrs and then transferred to gastro ward. Having scans and correcting her bloods she stayed there for 2 weeks. We were then discharged to wait for a pancreas specialist, who we saw on 25th Sept. She has an issue with her pancreas which won’t cure her pancreas flares, but could help with the pain she still is getting, this is up to Beth to decide. Beth is also still bleeding and has been for well over a year. She had an op in May to do a mucus fistula so we could do recycling. We did start this, then she ended up with her pancreas flare (only new thing we had done) so that was stopped, plus it didn’t make any difference to her bleeding. She is still on steroids as every time we reduce the steroids she bleeds. She has a puffy face due to the steroids.

Beth is still suffering with pain in her ribs, back and bowel. We are waiting for a meeting with gastro and surgical for the next step.

Beth’s peg is infected and unable to move and not draining, as Beth chooses to drink water as on free drainage, but as not draining. She’s being sick, she’s had 2 lots of antibiotics and it’s still there so waiting for a date for them to go in and have a look to see what’s going on.

Beth is in her last year of seniors, so will be doing exams soon. At this moment in time Beth has tutors to the house for a couple of hours which she does struggle with. Beth is doing really well in Maths, English, but on the other hand not great, but we have been told not to push her as she has until she’s 25 to do exams. Beth still does cooking and she can get a BTEC for this. Beth is also starting makaton by Skype, she’s like a guinea pig for this, for if this works, then it will be offered to others this way. By the end of it she will be qualified.

On Wednesday night Beth went to Jack Petchey, where she received a medallion, as her local hospital teacher nominated her a while back.

Update 25th February 2019

Thank you to everyone who sent Beth Xmas cards/gifts – we had a lovely Christmas. January and February have been tough months. Beth started bleeding again, this is after a few months on steroids, then the pain is bad, so back on steroids again until we see her surgeon in March. Beth has also been sick, her tummy doesn’t want to drain into her gastric bag some days, it results in Beth being sick, this then tires her more. Beth had a fab birthday, she was spoilt, but worth it. Thank you to everyone for her cards/gifts. Beth does cooking/baking 3 times a month. Today was rock cakes. I must say they were delicious. I was trying to be good as on a healthy eating diet. Well not today, just had to try them 😀. On the 13th Feb one of our dogs passed away, we were lucky enough to have Cookie for the nearly 4 yrs after we rescued her from dogs trust, but it was like she had been in our family longer. We miss her so much. We still have Patch who is about three who we rescued just over 2 years ago, who is the craziest dog but well behaved.

Update 12th September 2018

Hi all, it’s been a bit manic here. Health-wise for Beth we are still in same position as before. Beth is having her yearly tests MOT next week, plus also having her Hickman line changed, as she has a cyst by her line which will not go. We have tried dressings, oral antibiotics ,then IV antibiotics but still the bugger won’t go, it is more painful when her TPN is running. So this will be done on Tuesday. Beth is missing her brother because he’s on deployment with the army, but hopefully back in November.Her sister Rebecca is going into the Navy at the end of September to start her training.

Schooling is not going great, she has started doing cooking after school (it took years to find someone), she also has one teacher that comes to the house. It’s the start of GCSE’s and at the moment Beth will be doing Maths, English, Science, then cooking in Btec. Beth also wants to learn sign language, so again waiting on school to find someone, as the school have had so much funding for her and not spent it on her. But Beth being Beth just keeps smiling.

Update 17th October 2017

The results from Beth’s tests in November/December indicated that there is very slight movement in her bowel, so the decision was made to attempt a very small amount of feed in to her bowel, to offer some protection to her vital organs from the damage that her Parental Nutrition (feed into vein) can cause. Unfortunately, due to repeated infections caused by the fact that Beth’s skin colonises some harmful bacteria, that if it gets inside the bloodstream will cause a nasty infection, on one occasion leading to sepsis which was a very scary time. She has also had to have the line into heart changed twice. The trial has been delayed as there was a lot of things to ensure were in place, as Beth has had nothing except medicines into her bowel for over 3 years.
Following Beths “MOT” (these tests involve several scans and x-rays to check the condition of Beth’s bones and vital organs, it also involves several blood tests and colonoscopy/ endoscopy to view bowel from inside and take biopsies) it was decided to try the re-feeding, so Beth was admitted to Basildon to try the feed and due to prolonged low iron levels, she also needs to have a blood transfusion.
Beth now has another busy couple of weeks with hospitals as she undergoes the trial and transfusion this week, and then next week must have the final part of her “MOT” at Great Ormond Street, which involves having to lay still for an extended period with a mask on (which Beth hates with a passion) and breathe a special gas to ensure her lungs are working correctly.

Beth had the first part of her trial last night which involved her feed being pumped in at just 5ml/hr for three hours, this caused a slight increase in her pain and a massive amount of reflux, but being the brave girl she is, Beth is determined to carry on and get as much of the feed as possible into her to try and avoid having to take other medicines. We decided the best place to do this trial was at Basildon hospital, due to previous attempts causing very painful episodes of pancreatitis. Due to the amount of nutrition Bethany needs it will never be possible to completely stop the nutrients needing to go into the vein, but the hope is that the feed into the bowel will enable the time on PN to be reduced slightly.Hopefully things are starting to look up a little bit in what is a continuing battle with her body, and after several years of backward steps, her body may at last allow her to take a step forward.

Unfortunately the feeding trials that Bethany had last week did not end very well. We had to stop the trial due to the levels of pain Bethany was suffering, along with indications that her pancreas would have struggled and other symptoms.

Beth also had a lung scan which involves having to breathe in Krypton gas, gas which absolutely stinks and makes Beth feel really sick, in order to get a clear picture of how her lungs are developing.

She has one more long enduring day at Hospital coming up before we can hopefully get to enjoy a relaxing weekend away with some great friends, and an opportunity for Beth to interact with her friends and recharge ready for the next time they try to feed her. Beth is home schooled at the moment with a private teacher paid by the school, she does 3 hrs a week which she is managing . Beth still isn’t great, a lot of pain in bowel & tummy which we are struggling with.

Thank you to everyone that has sent post & gifts much appreciated xxxx

Update 25th January 2017

Bethany had tests on her bowel in November/December and we are waiting for results.
She has had a tough time lately with pain and fatigue, she still has tutors come to the house so she can still be educated, which is good as she can only manage an hour a day. Bethany is not behind in English or maths which is excellent, she is a quick learner. Over Christmas Beth was poorly with throat and chest infections and we ended up in A&E Christmas Eve because she had a temperature, so we had to be on the safe side because of her line. Thankfully it wasn’t to do with her line and she just needed antibiotics for the infections, other than that Beth has been the same: up and down.

Update 14th November 2016

We attended an appointment with a group of Beth’s specialists yesterday in order to discuss the next steps in Beth’s treatment. It was not the outcome we had hoped for as they are very nervous about taking the steps that are needed to make Beth’s life more comfortable.
Beth has been having terrible bouts of pain which are unexplained as her bloods are unusually within “normal” (whatever that is) limits. One thing that was found by chance is a level in her blood called carnitine which has been extremely low. This is not a part of the blood that is normally tested after the Guthrie test. This was tested after a recent clinic by chance due to the troubles experienced controlling her sugar levels. She is now on a supplement in order to increase the levels but this can take up to 3 months to start showing any effect.
At the moment of typing we are still searching for a Dr. that will see her with her pancreatic divisum, as whilst this is far from rare in adults it is virtually unheard of in children. We have been waiting 9 months now for this referral and still we are unable to find a Dr. on the NHS that we will see her.
As a result of this delay and the need to get Bethany in a position where she can start to return to school (she has been unable to attend since March) we are going to need to find a private consultant.
Before any decision is made on surgery for Bethany she needs to go into hospital for a weeks worth of tests, to see if there has been any sign of the intestine trying to recover from the failure it suffered over two years ago.Considering her colon has collapsed we are pretty sure there is no sign of recovery.
The tests involve her having a special catheter to measure the movement of her bowel either inserted through her PEG site (the hole near her belly button). If they’re unable to do this then it will have to be inserted into her nose and through her stomach into the intestine. Once she’s recovered from this she will have to have a tube (not the same one) inserted into her rectum in order to measure the large bowel and to see how bad the collapse and inflammation that showed up on her recent scopes is and whether the colon is adding benefit or causing more problems and needs to be removed.
On a positive note we have finally after lots of pushing by the school and specialist care team, managed to get a tutor to come in 3 times a week and tutor for maths and English Also one of the LSA’s from the school to come twice a week in order to assist Beth with the more practical side. Beth is loving being able to start learning again and is mega proud of the fact that she has a reading age almost a year above her physical age.
We have a date now for Beth to go into hospital, 30th November, she will be in for 10 days for these tests to be done. We have just had a few days at Little Havens Hospice chilling, which is nice. We are off to Disneyland Paris at the weekend thanks to Little Havens putting our name forward for this trip. Beth can’t wait. After that she will be in hospital, so it’s a much needed trip.
Follow Beth’s fund on Facebook for regular updates.

Update 20th September 2016

Hi all, Beth has been much the same as last month, up and down. She had scopes done during summer holidays, which have shown more problems, one of which is big; her large bowel has collapsed and is showing distal colitis. Beth has been put on more meds because of the colitis. She needs to be seen again by the motility team about the colon, but it does explain the pain she is getting in her back and bottom. We are still waiting to see a pancreas specialist, who is willing to see her as most only deal with adults. Bethany’s TPN calories have to be upped as she’s not gaining weight. Everything is tiring Beth out. If she does too much she becomes unwell, dizzy, feeling sick and drained. She is still unable to go school, but is getting a tutor, hopefully soon, she said earlier “I do more maths then English” lol. She hates English, as it’s a lot of writing/typing which she can’t do a lot of, as her hands get tired and painful. Maths she loves (don’t know where she gets that from). Beth is looking forward to meeting other families at the Chessington weekend.

Thank you so much Post Pals for organising this weekend and all the other bits you do for our children.

Update 19th August 2016

Beth is still up and down. She was in hospital a few weeks ago with another flare of pancreatitis, we are still waiting for the specialist appointment and it’s taking far too long. Beth has good days and bad days – more bad than good at the moment. She’s had a busy few days as her older brother passed out as a grenadier guard at Catterick, which was amazing. Then we stayed at a friends house for a few days. Now we’re back home she’s struggling as she’s overdone it. It’s not right a bit of fun can cause this, so unfair. We are at hospital next week for scans & scopes – more issues. We are hoping the scope doesn’t cause another pancreatic flare. We are not sure about Beth going back to school in Sept. We have to have a meeting, as before when we tried upping her school time, she became unwell and very tired. Sometimes she’d be there for 20 mins and it’d be too much, too many people, too much noise, pain etc.

Update 4th May 2016

It has been a hectic couple of months to say the least, with lots of out patients appointments and then the weekend before last, Beth’s pain levels started to increase significantly, resulting in her being admitted to hospital on the tuesday with another bout of her latest issue, which is pancreatitis.
Beth has been diagnosed with pancreatic divisum, which in itself shouldn’t cause too many problems.But when you add it into the mix with everything else that Bethany has, it has meant 6 bouts of pancreatitis in just under 2 years.This has not been seen before by her specialists, in all their years of medicine. There is no doctor in the UK that specialises in the condition in children, making it very hard, if not impossible to get advice.
Her surgeon in London wants to carry out a procedure that involves a lengthy operation, that has only been done on a child once and never on anybody with the extra intestinal problems that Beth has.So there are still lots of questions and checks to be done before a final decision is made. The operation will require a 2-3 month hospital stay for recovery and then more recuperating when home.

Beth was allowed out of hospital at the weekend, still not able to do much, as  her pancreas is causing a lot of pain, she’s on a few pain medications but they are not always working.We are still waiting for a call to discuss exactly what the surgeons want to do. In the meantime her pancreas levels are on the way up yet again, if they are she will have to go back into hospital, will update if this happens.

Update 28th February 2016

Beth had her new Hickman line put in a week ago! This means she now can go swimming at Little Havens. Beth is still struggling with sickness and pain. She is also suffering with dehydration even though her TPN bags are 4 litres  and she has 3750ml of that every night. She is getting tired very quickly and we just don’t know what’s going on with her at the moment. No one seems to be bothered or have a clue what’s going on, which is hard for us all to deal with .We have asked for a transfer of care to another hospital, so fingers crossed this happens.
Beth had her 12th birthday, so thank you everyone who sent her cards and gifts it cheered her up.We also told her about what Post Pals are planning, she is so excited as her favourite animals are giraffes.

Beth is trying school but it makes her very tired, causing her headaches.Thankfully OT is going in to try to give advice on what Beth needs, and to try it before phoning me to collect her.As you can imagine she goes in for an hour sometimes , then I’m called after 30 mins ,so by the time I’ve got home it’s time to go back. It is what it is and we deal with it as best we can.
Thank you again for your hard work in making Beth smile, which puts a smile on our faces.

Update 3rd January 2016

Firstly like to say thank you to everyone that sent Beth cards and gifts.

December has been a funny month. Beth still hasn’t been at school as she’s been struggling with pain and tiredness to the point of being sick! School have been fab and they have sent her a 1-1 to the house to do some work, but even that is a struggle for Beth at the moment. Beth has had lots of sleepless nights again with pain/sickness and feeling faint, we are hoping for an explanation for this, when we see her London consultant. We are still waiting on the genetic test for her genetic pancreas results and we’re hoping it will answer why her pancreas keeps playing her up, but it’s a waiting game. Beth has so many hospital appointments in January, 1 of which is for her new Hickman line to be replaced and PICC taken out. This should be done the 8th Jan, but at the moment Beth isn’t feeling great and has sore throat, so we’re hoping it clears up ASAP.

Update 2nd December 2015

Beth spent three weeks in hospital due to having an infection around her line (not in her line). But because of the type of infection it was, they decided they would remove the line and replace it with a PICC line until January, when a new Hickman line will be placed. She needs to have another two weeks of antibiotics just to make sure the infection has gone. Beth’s pancreas decided it would flare up, making her more poorly than the infection. The doctors have now decided it’s not after operations that it flares up, so it’s anything that can trigger it. They have done some genetic testing to hopefully find out why. She also had a scan which shows the pancreas is not right, so we have to wait for results before she is referred to a specialist. Her pain has been up and down, but the local pain team are fantastic, although she’s feeling sick more and more lately.  Her bloods are all over the place and this infection has hit her hard, tiredness is a big thing and anything she does makes her so tired. Bethany’s school has been fantastic and has done a plan for her 1-1 to come to the house and do a bit of work with her if she’s up to it. Then when she’s up to it, she can go to school and see her friends for an hour. When school and us feel Beth is ready for lessons again, then she can do an hour or so a day, hopefully this will be soon, as she loves school and misses her friends.

Update 13th November 2015

Beth has needed to be admitted to her local hospital because she has a pocket of fluid under her Hickman line, this has given her an infection and so she will be in hospital for another seven days, so they can give her IV antibiotics x

Update 22nd October 2015

Bethany started senior school which is great, she is doing half days as she’s finding it very tiring. She loves it there and has made new friends. However, her health is a roller coaster at the moment, both good and bad days.

Can everyone check they have the new address for Beth which was changed a while back, as post is still being sent to old address, thank you.

Update 5th September 2015

Bethany is still suffering and we will be trying something new at the end of September to try and treat her inflamed bowel. Beth has said she will try it once, but if it hurts, then no more. As she’s 11 years old we gave her the choice because it’s her body.

Bethany started senior school on Friday and everything has been put in place for her, including a 1:1 teacher who seems ok. Beth will only be doing half days because she gets very tired.

Thank you to everyone that has sent her letters/cards and gifts.

Update 23rd July 2015

Bethany still isn’t great. She should have had surgery to remove her large colon but during surgery the gastro doctor decided not to go ahead. We are not sure why as Beth still has same problems as before. Whilst in hospital Beth started having issues with her sugar levels and so now we have to carry an emergency kit with us until she goes in for tests. Beth had scopes that showed her bowel is inflamed but we have to wait for her doctor to come back from holiday for a plan. In the meantime Beth is taking things day by day, some are good and some are bad, but she still smiles.

Update 1st May 2015

Bethany managed to do an hour each day at school for a few weeks until Tuesday when she ended up back in hospital due to pain in her bowel. We are waiting for surgeons at GOSH to come up with a plan. At the moment they can’t keep the pain under control so we have a very grumpy Beth.

Update 7th April 2015

Beth is still up and down and has been in hospital for 12 days as we couldn’t control the pain.

Bethany donated Easter eggs to the underprivileged children in our area which was great. It’s Easter holidays now so we’re doing as much chilling out as she can before going back to school for an hour every other day.  Hopefully we can build these hours back up.

Update 11th January 2015

Bethany had a good Christmas and thank you for all the post and gifts sent for Beth and Rebecca. We went to Harrods with the respite team which Beth loved and then we had a quiet Christmas.

She went back to school for two days and then started feeling unwell, so she has stayed in bed for the last few days and has only come out of it to go and see the doctor. They don’t know why she’s in pain and suffering at the moment, but hopefully we can get her back in to school tomorrow, just so she can socialise.

We have lots of appointments coming up and hopefully this year is a better year for Beth and someone out there can help her.

Update 1st Deceber 2014

Beth isn’t great and is still up and down. She is struggling with just doing half days at school. There’s lots going on but still no answers.

Beth has a Lego advent calendar as she’s unable to eat and she is looking forward to getting our Christmas tree at weekend.

Beth would like to thank everyone for the post sent to her and her sister, as they both love receiving post.

Update 29th October 2014

Beth is still not great and tpn is still all over the place.

We have been away for a holiday and Beth was struggling with that but has tried to join in even though in pain and very tired.

Beth is going to try her first full day at school on Monday – hopefully she can cope but if not then at least we have tried.

Update 9th October 2014

Bethany is still struggling with school but manages half days. I’m glad to find out that she still manages good grades, despite the time she had off while in hospital.

This month we find out what respite hours we get as it goes to panel. Beth’s pn has also been changed yet again which has given her eczema. Roll on appointment with a consultant!

Update 28th August 2014

We have been home a few weeks now. We settled quickly doing all tpn and her other medical needs, but Beth still isn’t right and the pain in her stoma is getting really bad again. We saw her tpn doctor the other day but all they seem interested in is sorting her tpn out right now, as lots of changes need to be done and she’s lost weight. Our concern is that too, but so is this pain which needs to be dealt with. We know it’s her gene causing problems with the bowel (it coats it and stops it working) and considering not much bowel works now we are concerned it will stop working altogether. So we are waiting for local to get back from holiday.

We are still waiting for our respite as no one seems to want to deal with tpn or be line trained and the next panel meeting is October. Beth is hopeful in going back to school even if it’s just for a few hours a day and we have a meeting next week. Until people are trained in line safety I have to be with her, but Beth needs her space as well as being with us, so hopefully they can get in there quickly and train all Beth’s care people at school.

Bethany wants to say a massive thank you to everyone that sends her post. As a family we appreciate everyone’s support in keeping Beth smiling.

Update 29th July 2014

Beth now has a hickman line and is on TPN. She has so much going on with her poor body not being able to tolerate bowel feeding. She spent 82 days in hospital but we are now home and trying to deal with the big change.

Update 5th July 2014

Bethany is still in GOSH but hopefully not for much longer. They have been unable to feed her into her bowel so she will be going home on TPN for bowel rest and we will be coming back to hospital in three to six months’ time to retry feeding into her bowel. We are just waiting for a central line to be put in and TPN training.

Post Pals does an amazing job, thank you.

Update 3rd June 2014

Due to Bethany’s recent acute episode she has undergone an ileostomy and now also has separate jejunal and gastric stomas. She is also currently on TPN (total parental nutrition fed directly into vein). Before they discharge her from hospital they will try and reintroduce feeding into the bowel. If this is not successful then she will have to remain on TPN permanently and in hospital until alterations to the house can be made.

Story written 2010

Ella was diagnosed with Congenital Nephrotic Syndrome at 8 weeks old. This is a rare genetic condition resulting in kidney failure, which meant Ella had to have both her kidneys removed and needing dialysis for 11 hours every night.

Ella has spent an awful amount of time in hospital, and due to also having a low immune system, has spent many nights in ICU, HDU, and the renal ward. She has not been away from hospital for longer than 3 weeks this year, so the hospital has defiantly become her second home. Ella’s low immune system has also meant that she hasn’t been able to mix with other children as much as she would love to.

Although Ella is a really happy sociable little girl, this year has defiantly taken its toll on her. She sometimes has little energy and can get frustrated as her body won’t do as she wants it to. She is small for her age and doesn’t look like a 3 year old and although she can’t walk she gets about bum shuffling when not connected to a machine which brings a smile to the people she passes on the ward.

Update 8th October 2026

Ella recently turned 19 and is 12yrs post kidney transplant (2014). A couple of years ago her kidney function took a hit and whilst it didn’t improve the biopsy showed no rejection. She had had few admissions with infections and seizures after trying to wean her off medications . Last year Ella transfered from childrens to adults. Shes really struggled with this as she had 18yrs of the same hospital and adults is so different but she still needs that type of support that adults doesn’t offer so been a tough time for her.

For past 9 weeks Ella has been in hospital with pnuemonia which made her kidney function even worse. Luckily thats improved a bit . She’s on strong IV antibiotics, had blood transfusions and had her steroids upped which is playing havoc with her diabetes but if they reduce the inflammation and help get her better then we just have to manage.

Update 13th April 2016

Ella and her family are now moving on from Post Pals. We want to wish them all the best for the future. Her Mum said this:

Ella has loved receiving post, on way home from school she will always ask “has the postman been”. She will always have issues, delays and transplant is not a cure but she is doing well (dare I say it, I’m touching wood). There are so many children in hospital, I know how much it helps receiving post when inpatient and decorating the room with cards and pictures definitely helped brighten the grey walls.

Thank you so much for the past 6 years on Post Pals, it’s brought many many smiles over the years even when smiling was the last thing we wanted or were able to do.

Update 7th December 2016

Ella’s knees and back are continuing to cause her pain if she’s on her feet for too long and she has stopped trying to take steps. She took her first ever steps earlier this summer but because of her problems with her bones her legs and joints are not aligned straight and they hurt which is putting her off.

Ella continues to need between 5-7 injections a day as well as regular blood sugar checks. She is also still having epo injections to increase red blood cells, her thighs are like a pin cushion. If her bloods are good when we’re seen at the hospital then she can move to 4 weekly clinic appointments. Ella is very excited for christmas and loving all the decorations and lights

Update 23rd August 2015

Ella is still having water infections that she can’t seem to shift, but this is probably down to her low immune system and anti-rejection medicines she has to take.

Ella has been having pain in her back legs and knees, so she’s got some new special shoes and insoles to help support her feet and ankles. We hope this will help, but her feet, ankles, legs, knees and hips, are not in the correct positions, so it will always be an ongoing problem.

She’s also having to go back on epo injection again, as her heamoglobin (although better than it once was) is not where it should be. Add that to the fact she already has 4-6 injections a day for her diabetes and she’s feeling like a pin cushion, but once they’re done she’s fine.

Her hearing also seems to be getting worse, which is another side effect of the steroids, so it’s going to be checked.

After all her hair falling out, it has started to grow back. Although there’s no legnth yet, it is starting to get thicker, so she’s hoping it continues. Ella always has the horrible side effects to any meds that she has, even if small risk, and for a girl it is an especially big thing to lose your hair. She just wants princess hair and a plait like Elsa from Frozen.

Despite all this, Ella had a fab time at the transplant games in Newcastle where she won a medal and 2 in team trophies. On one race, right at end, she left her walker and walked over the finish line – she was so happy and I was a very proud and emotional mummy!

Update 24th July 2015

Ella has been well in herself although she has needed lots of trips to hospital for blood tests. This is because we’ve been struggling to shift a urine infection, so lots of new antibiotics too.

On a happier note Ella took her very first steps, at nearly 8 years old, which got her on the tv 3 times – twice with Granada reports and once on Good Morning Britain. She now tells everybody she is famous – she really loved being on tv and lapped up all the attention.

Despite the first steps being taken, this is causing problems with her legs, knees and back as they’re in funny positions. This is due to bone disease dialysis and not walking. When she does walk, this is putting pressure on her joints and back, but we’re hoping some more supportive shoes and physio will help this. Ella also needs to restart epo injections to help increase red blood cells, as hers are low so she’s a bit anaemic. It’s not good as it’s another injection and she already has insulin injections about 5-7 times a day.

Update 2nd May 2015

On 7th May it will be 1 year since Ella’s kidney transplant. It is a huge milestone for Ella and the family, so we’re having a little party for ‘sidney kidney’, as this is what Ella calls her kidney! Two days later on 9th May, Ella has been chosen to be race starter for the Morrisons Great Manchester mini/junior marathon. She’s so excited and has insisted she wants to do it with her walking frame not wheelchair.

Ella had a fab Easter – her first Easter that she could eat Easter eggs, as she couldn’t eat them before transplant due to strict renal diet. She was also in ICU at Great Ormand Street hospital last summer.

We are having issues with Ella’s anti rejection meds as her hair is falling out and there’s not much left now. If things don’t improve we may have to change meds, but a happy kidney is more important and so it will needs lots of thought. Diabetes is also still an issue, requiring lots of insulin injections every day, so it wasn’t short term as we had hoped. Ella’s had extra trips for blood tests at hospital this month due a to water infection, but luckily antibiotics sorted that out again.

Update 5th February 2015

Ella has had 2 hospital stays this month, both with very high temperatures. The first time was put down to viral infection and infection around her gastrostomy button site and the second time she had a water infection. Luckily once the antibiotics kicked in Ella was loads better and blood levels improved. We have to go back again on Monday for repeat bloods as her blood clotting level has gone too high again, so we need to adjust her warfarin medicine dose. Consequently she has been at the hospital a lot these past few months but luckily Ella likes it there.

Update 11th December 2014

Apart from the typical cough and cold, Ella has been well lately – it just takes her longer to fight bugs and illnesses as she is immune suppressed. Transplant clinic appointments are now every 3 weeks instead of every 2 weeks.

She’s going to school full time and doing well. At the moment she’s enjoying practising her school nativity play. She is opening the play and she’s in her element when on a stage, so she’s very excited.

Update 4th November 2014

Ella has been going to hospital each fortnight for transplant clinic. The doctors are happy although there’s still an issue with her heamoglobin level being low (which is ongoing) and her pottassium being high, but they assured me it can take a while to settle. Ella’s anti rejection meds are also making her hair fall out so we are also keeping an eye on that as it has gone very thin.

The good news is her growth is picking up, as at the beginning of the month growth hormone injections were being mentioned because she’s so low down on the height charts. However, over the past 3 clinics Ella has grown 2cm each time, so she’s definitely having a growth spurt and at clinic yesterday the doctor said we can hold off on the growth hormone injections.

Ella still has diabeties which I was hoping would have settled by now, but as she is still on steroids her sugars are going to be high, so she’s requiring regular insulin injections many times a day.

Update 18th September 2014

August has been a busy month with lots of clinic appointments to change Ella’s medication. She was having injections twice a day to thin her blood, but on top of all the insulin injections and finger pricks to test blood sugar, this wasn’t ideal. The medicine in this injection also really stings, so we were swapping for warfarin in a tablet form which is kinder than injections. However, this meant going every day to hospital for bloods until she reached the correct blood clotting level.

Whilst this was going on, Ella’s haemoglobin level dropped again so she needed a blood transfusion. This is not ideal for transplant patients so to prevent needing another Ella also had an iron infusion a week later.

The week before bank holiday Ella’s cmv infection returned, and although well in herself, this caused her creatine (kidney function) level to creep up which isn’t a good sign. She spent the week going back for bloods but each day it got higher, so Ella got admitted over bank holiday weekend and had operation number 41, which was for kidney biopsy and to start iv steroid infusions. We had a long 24 hour wait for results but luckily they came back ok and her levels had come back down. Luckily they could also stop steroid infusions as this caused Ella’s sugar levels to go through the roof and not even recording on the tester.

On a good note, Ella has been well and her legs are definitely getting stronger. She is using her walking frame for longer periods and getting more confidence using it.

Update 28th July 2014

Ella is doing really well (dare i say it!) and we’re nearly 3 months post transplant. Clinic appointments are now every 2 weeks instead of weekly. This is very strange for us as we’ve gone from going every other day, to weekly, and now fortnightly. It is a very nice strange though.

Ella had her 40th operation a few weeks ago to have her stent removed and her gastrostomy tube changed to a button as she needs this for all her medicines. Ella is still having to have blood sugars checked and is needing insulin, but she’s still on steroids and we’re not sure when these can be stopped. She obviously doesn’t like all the finger pricks and injections every day, but luckily will forget after a while. She is also still having blood thinning injections but the doctor did say we could possible swap for aspirin which would just be tablet so one less injection. Fingers crossed!

Update 5th June 2014

Ella had her kidney transplant on the 7th May and is doing well. She is still in hospital though as the steroids needed have affected her pancreas and she now has diabetes. We are hoping this will be a temporary thing but in the meantime she’s needing lots of insulin injections and lots of finger pricks to check her blood sugar levels which aren’t nice. However she soon forgets about them and is happy and playing again.

Ella got transferred to Manchester children’s hospital from GOSH last night (4th June) so we’re nearer to home now. We’ve been far away from family and friends for a long time.

Update 4th June 2014

Ella is on her way back to Manchester children’s hospital from Great Ormond Street after a good response to her kidney transplant.

Update 8th May 2014

Thank you for everybody’s messages, it has been such a hard 24 hours. The operation went really well (although it took 9 hours) but the surgeons were really pleased. She got taken back to theatre to open her up and look at the kidney as she wasn’t urinating, but thankfully after an hour the surgeons told us the kidney looks fine. They think it is just a sleepy kidney which is common, especially as the operation was so long.

She’s now doing 7mls per hour which we’re so happy to see as Ella hasn’t urinated since she had both her kidneys removed at 19 months old. Fingers crossed it starts to pick up more but after 2 operations in one day I’m not sure my nerves can take any more! It is never straight forward for my poor baby girl.

Update 2nd May 2014

Once again, plans were made to come back to Great Ormand Street on certain a date in preparation for transplant which is planned for 7th May. The day after getting this plan Ella’s dialysis line wasn’t working properly and then the next morning Ella had pulled it again. After a big panic and flap we got her to Manchester Children’s Hospital where we were blue lighted in an ambulance to Great Ormand Street. This was the day before Good Friday. Once at Great Ormand Street we spent the night trying to get Ella’s potassium/phosphate levels down. Due to not getting dialysis since the Monday these were high, as her body can’t break these down and are harmful and dangerous if too high. She was on 2 lots of different i.v meds and nebulisers hourly through the night to make her safe to go theatre. This took a while and she didn’t get to theatre until 12 midday. We were told this was a very tricky operation with no guarantees of getting a line in due to Ella having really bad access because she’s had so many lines previously. There was talk of maybe going into the liver but this was also very tricky. Luckily the surgeon got a new line in just above where her old one was. Ella had to go straight to intensive care on a ventilator after the operation as she was so fluid overloaded they struggled to get the breathing tube down her. They were worried if they took the tube out there would be problems, so she went to icu on continuos dialysis until all the extra fluid was taken off her. Two days later Ellaa was extubated (taken off ventilator and breathing tube taken out). On Easter Sunday Ella was transferred back to Eagle ward and allowed a little bit of easter egg. We’re still there now as it was felt best to stay here until transplant, so she’s had her ECHO ultrasound, chest x-rays and blood tests, all in preparation for transplant on 7th May. Throughout all this Ella has been oblivious as likes being in hospital and we’ve had chances to get out for walks and to the park.

Update 21st April 2014

Ella is now off the ventilator and has moved back on to the ward from ICU.

Update 19th April 2014

Ella is at Great Ormand Street hospital in PICU on a ventilator. She pulled her dialysis line out and as she didn’t get dialysis since Monday, all the extra fluid that built up made her extremely fluid overloaded. So she had operation 36 to put a new line in, which luckily they managed, as it is extremely difficult to find access. She went straight to picu and hopefully once all fluid is off they can take her off the vent.

Update 8th April 2014

After the past 2 transplant cancellations in February and March, Ella is now home and continuing her heamo dialysis at Manchester children’s hospital 3 times a week. We have been given a new “provisional” date for transplant as May the 7th. We would be going back to GOSH two weeks before (around 23rd April) so fingers and toes crossed and prayers it goes ahead this time.

Update 25th March 2014

Ella has had a very rough time after being admitted to hospital on 15th January with a line infection. She had to stay in for 6 weeks of iv antibiotics and whilst there we got a date for transplant, which was 19th February.

So, at the beginning of February we were transferred to Great Ormand Street Hospital from Manchester Children’s Hospital. Unfortunately, the day before transplant, whilst having dialysis, Ella had a seizure and the transplant was cancelled. She had an emergency CT scan and luckily this was ok and the seizure was due to the more intense dialysis washing out her medicines.

We were soon given a new date for transplant (18th March) and allowed to go home to return to GOSH on 11th March in preparation for transplant. A couple of days before leaving for GOSH we got a phone call saying transplant had been cancelled as there was a problem with theatre slots. We were assured this was all sorted so it left us all very angry and confused. Luckily, a few days later, we managed to get everything back on track and we went to GOSH the following day.

Whilst this was going on Ella had been complaining her leg was hurting and swollen and she wasn’t wanting to move it, so we got her leg scanned whilst at GOSH. This showed the muscle in her thigh was full of blood so she needed a trip to theatre which got cancelled at 10pm after being nil by mouth all day. Luckily, Ella went to theatre at 3pm the following day for operation number 36, to have her leg drained and leave a drain in.the operation went well and Ella was ok despite needing 100mls of blood draining just from muscle. The drain was removed the day before transplant, but after an echo scan on the same day, the consultants decided it was best to cancel the transplant again. So, in the space of a month we’ve had the transplant cancelled twice on the day before.

We are now at home but don’t have a new date yet. We’re waiting to hear back from GOSH as to what the next plan or date is. Ella is still in pain with her leg but nothing like it was, so we are hoping it’s just a case of needing time for it to heal, as she was left very badly bruised.

Update 23rd February 2014

Ella is being transferred back to Manchester Children’s Hospital today. We should have been going home today but because of her high blood pressure we’ve got to stay in hospital. She will be back to GOSH on 11th March ready to try transplant again on the 18th March.

Update 20th February 2014

Ella’s transplant didn’t go ahead yesterday after all the build up and planning and 6 weeks already spent in hospital. She had a seizure during dialysis on Tuesday afternoon (the day before transplant) so it had to be cancelled. Luckily, despite needing to be sedated and an emergency ct scan, there were no bleeds and they think it was all down to needing a higher dose of meds now that she is on anti rejection meds, as one of them lowers the seizure threshold. So it is a case of waiting for blood results for levels and also waiting for another date. More importantly though, Ella is fine in herself.

Update 5th February 2014

Ella is now at GOSH as we got transferred from Manchester children’s hospital today. I was hoping to get a couple of days at home next week before transplant as we’ve already been in hospital 3 weeks but we’ve been told we’ve got to stay in, so it’s looking like a very long stay ahead and far from home.

Update 29th January 2014

Ella has been in Manchester Children’s Hospital for the past 2 weeks. She had a line infection so is being kept in on 3 different iv antibiotics. Doctors have said they want her to continue the iv antibiotics for another 2 weeks, although this now may be longer as on Monday we got a phone call from GOSH with a date for transplant. The date is 19th February and so we may be on them up until transplant and are looking at a long stay in hospital.

Update 25th January 2014

We got a phone call from GOSH yesterday. Ella’s transplant will be on 19th February. She’s still in Manchester Children’s Hospital on ivs and will be for 3 more weeks. We are hoping we can go home for couple of days before we need to go to GOSH, but it looks like it will be out of this one and straight to GOSH, so we are looking at a long stay in hospital.

Update 6th December 2013

Ella has had a rough couple months and spent 5 weeks in hospital having 3 operations in the space of a week. This was due to problems with her central line which she’s dependant on for dialysis. Luckily the new central line was put in and an artery on the opposite side that had been blocked due to previous central line being there was unblocked and a stent put in to keep the artery open which was a relief. From this operation another clot was found which wasn’t there the week before and we found out Ella had abnormal blood clotting, so we had to stay in hospital on continuous heparin infusion to thin her blood and had to have bloods taken every 4 hours which was very stressful for her. She is now having this treatment by having an injection twice a day which she hates and gets so upset, but luckily after lots of cuddles she calms down.

As for the transplant, we were originally told it would happen before Christmas but that’s obviously not the case now, as we’re still waiting to hear back from GOSH. Despite all this Ella is very excited for Christmas and is loving all the Christmas songs and decorations.

Update 26th October 2013

Back home from an emergency admission / transfer from Manchester Children’s Hospital to Great Ormand Street Hospital. Ella’s line started playing up last Saturday as when connected to dialysis machine the flows needed to filter and clean her blood were not strong enough. After unblocking infusions it was a trip to theatre for a new line. This was operation 33 but unfortunately she came back from theatre with no line and the surgeon saying there is no way of dialysing Ella. Luckily, within hours we were on our way to Great Ormand Street and the next morning had operation 34. After a very long 4 hours a line was put in. It was a horrendous week but despite this Ella remained her cheerful self and just wanted to go in the playroom. We’re now waiting on a date to go back to GOSH for more detailed scans either next week or the week after.

Update 23rd October 2013

Ella was transferred to GOSH from Manchester children’s. Her operation on Monday night did not go to plan as the surgeon could not get a central line in which she is dependant on for dialysis. After a CT scan at Manchester, GOSH said they will try using balloons and stents, so Ella is in theatre now at GOSH having this done.

Update 1st October 2013

We’re still waiting to hear about next stage of transplant work up and still awaiting a date for this.

Ella has had a good month settling into her year 1 at school and likes her new teacher.

Update 18th September 2013

Ella had an echo scan at the hospital as build up for transplant. Luckily everything was fine so now we’re just waiting to hear back from GOSH.

A huge thank you to everybody who sent birthday cards for Ella. After looking at each card she shouted ‘thank you Post Pals!’. Huge thanks for the moshi monsters magazines too, I thought Ella was going to burst with excitement!

Update 21st August 2013

Tests are still ongoing with Ella’s Nanna who’s a blood and tissue match to donate her kidney to Ella but now is having scans and blood tests to see if her kidneys are working fine.

Next month will be 3 years since Ella’s transplant happened and failed within the same day and it was scary times as it is Ella’s only option, so it is very good news that Ella can have a second transplant as last year wasn’t an option due to poor arteries.

Apart from this Ella is enjoying the school holidays and continues to go hospital three times a week for her dialysis.

Update 31st May 2013

After having a new central line put in (after only having the last one put in on the 15th March) things have been ok. We are currently awaiting blood results from Ella’s Nanna to see if she is a match to donate her kidney. This will be Ella’s second transplant and due to the first one not working this transplant is being treated as high risk and being done at Great Ormand Street Hospital not Manchester. This means we will be a long way from home but it is Ella’s only option.

Ella continues to go hospital 3 times a week for her dialysis and enjoys using all her new colouring books and kits to occupy her whilst she’s connected to the dialysis machine.

Update 9th May 2013

After returning from Great Ormand Street where Ella had a new dialysis line fitted, this has since had to be removed and a new one put in. This was tricky as her access is poor, but luckily a new one is in and working.

In the past week we have heard back from Great Ormand Street, who after looking at results, have said there is a vein/ artery big enough for Ella to have a kidney transplant. This came with very mixed emotions as Ella’s first kidney transplant went very wrong. Last year we were told she was untransplantable though, so obviously this is good news now as transplant is the only option for Ella. We have no date or time span as to when this will happen, just that they will push for it to happen. A family member is awaiting an appointment to have further tests done to see if she can donate her kidney. In herself, Ella is doing well, enjoying school and getting excited for an upcoming holiday.

Update 1st April 2013

It has been quite a stressful month. Ella’s planned operation to create a fistula in her arm didn’t go ahead as the morning of the operation an echo scan showed a clot inside her main artery where her dialysis line lies. So another operation was arranged to remove the line as this would break the clot up or it would come out with the line and they would put a new line in. The operation seemed to go well and Ella was sat up wanting toast within half an hour of being back on the ward, but another echo scan showed the clot is still there and is in the same place and same size, so it felt like a waste of time. However, the operation provided an opportunity to put dye into Ella’s veins and arteries so the consultants can look at them and see if Ella can have a transplant again. We’re still waiting to hear back from GOSH so I’m not sure on the plan yet.

Update 9th February 2013

We are still awaiting the results of Ella’s scan she had done on her arms. It was to look at her main arteries and veins in her arms to see which would be best to create a fistula in her arm, as this is seen as a better way for Ella to receive her heamo dialysis in the long term because there is less chance of infection and it lasts longer than hickman lines do. We went down to Great Ormand Street for this and were then sent to Guys hospital for the scan. So up until we hear back from GOSH we won’t know what type of fistula Ella will be having and when. It is difficult trying to get information as Manchester children’s hospital have never put or used fistulas in children (just teenagers) so we just have to wait for GOSH to get in touch with Manchester and then let me know.

Ella had a short stay in hospital in January due to high blood pressure which led to her becoming unwell, but luckily was fine soon after.

Update 11th December 2012

Ella’s mri scan was cancelled last minute as her consultant decided it would be best for her to have a general anesthetic rather than just sedation, so that will be happening on the 7th January. Hopefully we’ll then get an appointment at GOSH to see a consultant as nobody at Manchester has created a fistula in a child as young as Ella (just teenagers) but luckily they have at GOSH. So, once we’ve had her appointment we will hopefully get a date for operation number 30. Ella needs a fistula creating in her arm for her heamo dialysis, she has always had rubbish IV access and has had lots of central lines which she uses at the moment, but central lines don’t last long so fistula is the best option for Ella.

Ella is very excited for Christmas and is looking forward to her school nativity play and Christmas party at school.

Update 12th November 2012

Ella is continuing her heamo dialysis 3 times a week at the hospital and going to school on the days we’re not at the hospital. She is doing really well at school and has settled in well in her first year at school.

After spending most of summer in hospital, we made it through October without admission.

Next month Ella is having an mri scan to see veins in her arms. This is so they can put a fistula in her arm so that we are not dependent on just the hickman line for her dialysis. We have to go to Great Ormand Street Hospital which we have never been to before, as no surgeon at Manchester children’s hospital or nearer to here has done this operation on children, only on teenagers, so it is all new for them as well as us. Luckily GOSH have done this on young children. After had scan at Manchester, we will hopefully get a date soon to go down to GOSH and talk about having the operation to create fistula in her arm. This will be Ella’s 30th operation but it probably won’t be until January.

Update 13th September 2012

Ella has had a rough couple of months as she spent most of summer in hospital. In May, we had to take her to A&E with the same reoccurring problem of severe tummy pain and vomiting. After being given way too much morphine and it not even helping, Ella had operation 27 to repair a huge hernia and to remove a small part of bowel and insert a support for her tummy wall where it had broken away. She also needed a new hickman line putting in as this operation meant she would have to temporarily switch to heamo dialysis instead of the dialysis she has at home (peritoneal dialysis) as any fluid going in would put too much pressure on the large scar after surgery.

Ella had a long recovery as she had high blood pressure and she’s had that much surgery on her tummy that things took a while to start again and then her scar started to open a little bit which needed vac therapy treatment. By the middle of July she finally came home although she’s still having to come to hospital every Tuesday, Thursday and Sunday for heamo dialysis.

Unfortunately, with being in hospital, Ella missed all the settling in days for her new school and we also had to cancel a family holiday. By August, the nurses tried her back on peritoneal dialysis, but the catheter for this was blocked so operation 28 went ahead in the hope of getting a new one in time for starting school. The operation seemed to go well as the surgeon managed to get a catheter in and although Ella was well and in good spirits when she first got back to the ward, I noticed after a few hours that she was breathing fast and had a high temperature and was then complaining of tummy pain. Three types of I.V. antibiotics were started but as days went on there was no improvement, so 4 days later Ella went back to theatre for operation 29 and unfortunately the surgeon had to remove the PD catheter and said her peritonaeum had adhesions that weren’t there 4 days prior, and although fluid went in, non came out, so home dialysis was no longer going to be an option.

The next day Ella started vomiting badly and needed an NG tube putting in to free drain all the bile in her tummy and was put nil by mouth. Luckily (and finally) by September and the weekend before her birthday, Ella started eating and drinking and moving about and being back to herself and was finally discharged from hospital.

Although Ella missed her first day and first week of school, she has started her ‘settlings in’ this week. She did an hour on Monday morning and did 2 and a half hours Wednesday and really enjoyed herself. It will be a long process settling her in and she still needs to go hospital for dialysis, but she can at least go to school on Mondays, Wednesdays and Fridays.

Ella also had a fab 5th birthday on the 9th September and enjoyed a party with friends and family. Thank you for all her cards and gifts!

Update 3rd July 2012

Ella has had a very tough 2 weeks and is still poorly in hospital. She had her 27th operation last week and needed part of her bowel removed – luckily only small part, but it was still not expected and she had to go straight to HDU. Ella also had a bad reaction to the morphine and had to be kept on oxygen and was also requiring blood sugars and gases done every hour so she was being pricked every hour. Due to the operation they had to change her form of dialysis – she was on peritoneal dialysis but has had to change to heamo dialysis to give her tummy a break. We are hoping she can go back onto pd dialysis before she starts school in September. Ella’s also had to be put on feeds as after 2 weeks she is still not eating or keeping fluids down. On the plus side, Ella is now off oxygen, morphine and ketamine, so I’m hoping things start settling down and improving very soon.

Update 16th April 2012

Ella had another stay in hospital with her re-occurring abdominal problem of extreme sickness and pain brought on by constipation, which resolved itself by day 4 . Doctors are thinking her intestines may be getting affected by her dialysis and numerous surgeries on her tummy, so not much can be done at this point apart from manage it as it occurs with i.v. pain relief and fluids, lactolose and suppositories. Unfortunately this admission happened on Easter Sunday so Ella not only missed out on celebrating that but she also missed out on going to see cbeebies live as we had tickets for her for that day.

On a better note, Ella is loving her new house and has more space to practice getting her legs stronger by being helped to walk about whilst we hold her hands. Her latest x-rays have shown her ankles are in a better position than they were 6 months ago too. They’re still not in the right position but are much straighter than they were so we’re hoping this continues now her parathyroid level has improved and she has the strength to try and get up on her feet. She also got a walking frame today which were excited about.

Update 8th April 2012

la is back in hospital again with the same symptoms as the last few admissions – very bad tummy pain and sickness. I’m hoping iv pain relief works better but we need to find one that works better because they said they can’t give morphine as it will make things worse (can apparently make you constipated).

Update 3rd January 2012

The operation Ella was due to have in October that got cancelled (due to her having a cough) is at present no longer required. She was to have her para thyroids removed as they were over active and causing all calcium to leak out of her bones. This was making her bones spongy and weak and so leaving her with bone disease and unable to walk. However, bloods taken since October have shown her pth levels drop from 2500 to 150 (this is still not a normal level as it should be below 50, but it is a huge improvement on what it was), and i am noticing the difference as Ella seems to have more strength in her legs and is always asking to be stood up. Although we still have to hold onto her, this is a massive improvement as she couldn’t do it before and would cry if we tried to get her to do it, so I’m hoping this continues.

A huge thank you for what you do. This is an amazing charity! Mornings can be quite stressful in our house with medicines and dressing changes, so when the post gets delivered my daughter gets so excited and soon forgets the trauma of sticky dressings and yucky medicines. I have often had to say to Ella to have the medicines quickly and then the post man will be here!

Update 5th March 2011

Ella’s operation went ok but unfortunately we can’t go home today as she now needs i.v. antibiotics because she had a high temperature, so we’re waiting on blood results.

Update 1st March 2011

Ella is having another operation on Friday to have a pd catheter fitted so hopefully when tested in a couple of weeks time we can go back to having dialysis done at home rather than in hospital. There’s no guarantees as her peritoneum was damaged but fingers crossed it has now healed and we can do dialysis at home as Ella has spent way too much time in hospital!

Update 14th January 2011

Ella has now been moved to the ward after spending a week on a ventilator in ICU. MRI and CT scans have shown little bleeds on the brain and sign of a stroke down to a condition called PRES (posterior reversible encephalopathy syndrome). We have to be patient as recovery will be a long slow process and we’re not sure by how much.

Today was good day though, she’s moving arms and legs a bit more and her eyes are focusing/following a little better. She also blew a kiss to her favourite nurse and gave her daddy a high five.

Update 8th January 2011

Please could everyone pray for my little girl Ella. She’s on a ventilator in ICU. MRI and CT scans have shown bleeds on brain. I just want her to get better so I can give her a huge hug. I’m missing my cuddles and need them more than ever.

Update 3rd December 2010

Ella had her kidney transplant in September, but sadly the transplant failed and Ella was only allowed home on the 2nd of December.

Story written 2011

Faith was born blind and severely epileptic. She had brain surgery when she was one to remove the focal point of the brain where the neurologists felt the epilepsy was originating from. Sadly they couldn’t remove it as it was on both left and right hemispheres of the brain.

Faith was able to sit but as her epilepsy worsened she is now totally immobile and in a wheelchair. Her bones are fragile and crumbling and she is due to have a big hip operation in September 2011 as her femur is not formed properly and her hip ball and socket joint is malformed.

Faith has a pulse generator in her chest with electrical currents constantly pulsating through a copper coil wrapped around her vagus nerve to try and control some of the seizures. Faith is highly medicated and is in a body brace and is fed by gastrostomy. She is non-verbal and her comprehension is limited.

However, Faith is our beautiful angel. She is accepting and sweet. She listens to voices and her eyes sparkle when she is content. She loves cuddles, being sung to and having her hands and feet massaged

Update July 2026

Faith is continuing to enjoy her sound bath sessions and loves taking day trips to garden centres, where she can smell the plants and enjoy the different textures by touching them.

She has also been making the most of her bath bombs, which she loves putting into bowls of water to soak and cool her feet during the hot weather.

Cooking remains one of Faith’s favourite activities. Although she is unable to eat, she loves the whole process of preparing a meal. She enjoys touching the ingredients, smelling them and taking part in the ceremony of creating a recipe.

Respiratory wise, Faith is currently managing well and continues to attend her regular respiratory clinic appointments. She does overheat very quickly, but thankfully she has air conditioning in her room, which helps her stay comfortable during the warmer weather.

Update 18th November 2024

Faith thoroughly enjoying walks out in her wheelchair, lots of fresh air and wind in her face and shopping! She especially loves any beauty experience. She thinks it is wonderful. She loves bath bombs, having her  finger and toenails painted, face scrubs, face cleansers, face masks you name it she just loves being pampered and loved . She is such a girlie’s girl!
She does have sensitive skin on her face so we do have to be careful.  

Update 31st of July 2023

Faith has just come home after a week in intensive care.

Update 30th October 2022

Faith still loving facials and foot massages. She has recently enjoyed moisturizing foot socks that you leave on for 20 minutes then massage her feet! Bliss for her. Such a sensory experience.

Faith loves outside daily walks in her chair and gentle chest physio stretches to help her breathing. Loves Halloween and the whole build up to Christmas. The music. Decorations. Everything!

Update 30th October 2021

Faith is doing well. Always her epilepsy is an issue however this does not stop her from doing things. Even though it can wipe her out for hours.

She is thoroughly enjoying wheelchair yoga the hydrotherapy pool, bath bombs which she loves, loads of facial massages face masks foot masks – one big spa day. She is certainly the princess of Spa!

She is currently busy making Halloween decorations for her room. Any sensation for her hands and feet she enjoys.

Update 26th March 2021

Faith has been shielding and will continue to do so until the end of March, when she will then be able to go into her class of 6. It is all very exciting! She has thoroughly enjoyed her song time and story time through school zooming and loving her foot massages and bath bombs, what more can a girl want!

Update 6th February 2021

Faith is still self isolating. Enjoying lots of sensory stimulation, such as foot spa, bath bombs, hand massages and enjoying the different voices on audio books. She has had her first vaccine, thank goodness, but she suffered for 3 days after. ☹️ Faith has a new cpap mask as the old design was cutting into her nose.We are all pleased with it😊. Anything to help 💤 sleep. Mae is studying hard on-line schooling and cooking lots in the kitchen and making a load of mess to go with it!. Thank you everyone.

Update 21st August 2020

Faith is doing very well at the moment. Faith recently had her front tooth come out luckily the one behind it has filled the gap! She certainly suffered sore gums, but feels good now.

Update 2nd September 2019

Mae had good GCSE results and is going to be in the sixth form studying A levels. Faith has thoroughly enjoyed being in the shade in the garden on sunny days.

Update 10th August 2019

Thank you to Claudia Meyer for being such a regular Post Pal to Faith and Mae. Lorayne your last post was epic! And your writing so beautiful. Thanks always to Debra and your super monthly boxes. Faith and Mae love them! And to all the post cards/cards from around the world!!!!!!!

Faith has been doing lots of pampering lately. Face masks, nails, exfoliation. You name it, she has been pampering! Mae dip dyed her hair red for the summer as school is out. Been baking and joining in with Faith pampering herself too and camping in the garden with friends.

Update 21st March 2019

Faith went through a blip of horrid seizures, but the last week she has been under better control. She is loving being on the peanut ball – it is freedom from being in the wheelchair! Thank you to everyone for their special cards and gifts. Xxx

Mae is busy revising for  GCSE’s it is such a tough time and she is exhausted.

Update 10th February 2019

Faith’s really enjoyed Chinese New Year at school – smelling five spices, ginger and everything sensory! And has a new Cpap mask that doesn’t rub her face any more when she is wearing it at night, which is great as she sleeps longer. Mae studying for her mock GCSE’s and then the real ones. Not easy. She burns incense while studying. The house smells amazing !

Thank you to everyone who has sent wonderful cards and gifts. Debra, Claudia, Loraine …… You’re all so wonderful, making us all very happy and so excited to get the post x

Update 2nd November 2018

Faith is still struggling with  hip pain. X-rays don’t show any stress fracture which is a relief! The consultant suggested a new moulded chair should help. Thank you for all the amazing cards and kind words and gifts for Faith and Mae. They are so appreciated

Update 10th September 2018

Faith has been enjoying the sea air a lot recently, as we have been visiting the beach a lot. Nothing like fresh air to blow the cobwebs out! Faith has been admitted to hospital because of a chest infection but she is out now. She is struggling with hip pain too. So the OT and physios are working with Faith.  She will be 17 in September, so a massive achievement. What an amazing person she is.

Mae has another hamster to replace her old hamster. It’s a boy! Haven’t had boy hamsters before. An animal is a great way to help her relax. Mae has been baking and making her favourite stir fry.  They’re both now back at school.

Update 26th February 2018

Well Faith is putting on weight, which is good, but her seizures are so unpredictable still, which gives her headaches. Her skin is so sensitive at the minute and fragile, so we have to use gentle creams and bath creams on her, but she is as lovely as ever!

Update 16th October 2017

Faith had a great birthday, 16! Cannot believe it!  Thank you for all the great birthday cards from all around the world! Faith has been enjoying the sensation of  baking chocolate brownies with her sister Mae. The smell of chocolate. Yum! Faith and Mae have been enjoying  foot spas and foot creams together.  Messy but super fun!

Update 24th August 2017

Faith has had a busy summer going to the zoo, shopping, bowling ,baking and in the garden!   Thank you so much 😊 for all the cards from England and around the world

Update 17th November 2016

Faith’s seizures are more frequent and we are keeping her away from anyone with any sign of a cold. Let’s just get through the winter!

Also a thank you to Celia B, Kaiso Gee, Claudia, Bev and everyone who sent a wonderful card/letter to Faith. Soo amazing you all are. Please can people leave their emails so we can thank them. x

Update 2nd October 2016

Faith has a cold and sneezing. We are nurturing her to make sure it is only a cold.
Mae is getting super excited about Halloween. Hmmmm. Spooky. Faith loves to dress up as a witch and scare anyone who comes trick or treating at the door.

Update 6th September 2016

Faith is almost 15. We cannot believe it! How wonderful this is. What a difficult year it has been and we are so excited to see her reach 15.

Thank you to everyone sending postcards, letters and gifts. So special, thoughtful and kind. We all really appreciate it and can’t wait for our postman to come everyday. It helps us get through everything.

Update 8th August 2016

Thank you Bev Higgins, Claudia Meyer, Hazel and Steve and all the super people who send incredible cards and best wishes! Faith and Mae think you are awesome.

Update 7th July 2016

Faith is putting on weight which is fantastic. Always trying to help her control her breathing – especially at night – and back pain. Nothing like a massage to relax her.

Update 2nd April 2016

Mae now has another hamster cage, as her two dwarf hamsters started to fight and one was injured. After nursing her back to full health in a separate plastic box, the hamster got a new cage. Mae’s bedroom is now a hamster school, she does love hamsters! Thank you to everyone sending hamster treats. They go down very well. Thank you for the books you have sent as Mae loves to read. Faith has thoroughly enjoyed having nail art done. She looks extremely glamorous ! And she enjoys the sensation of having her nails done. Thank you to everyone sending the nail art and nail varnish. Great gifts.

Update 5th March 2016

Just wanted to add in a massive thank you to Mr Moore for Mae’s fabulous books! Faith is gradually phasing in school starting with 2 hours on Friday!

Update 3rd March 2016

Faith is doing well considering what she has been through. Her breathing is so difficult and the respiratory consultants are working on a plan for a bipap cpap and nasal oxygen, as she is thoroughly exhausted just breathing!.

Mae is enjoying baking, she made strawberry muffins recently and she ate them all before we got a look in! She also loves all 5 of her hamsters! Thank you for all the wonderful cards and letters of support. Please can everyone put their email address on their parcels so we can thank them!

Update 7th February 2016

Last Saturday they moved Faith onto a portable ventilator, 3 PICU nurses and a consultant wheeled Faith in a hospital bed outdoors and along to Big Ben. Faith’s family cut a cake decorated by Mae and toasted Faith as Big Ben chimed, before returning to PICU. They surrounded Faith with pink heart balloons, handmade heart confetti and said their goodbyes. Faith was taken off the ventilator and was expected to have between a few hours and a day.

Faith has now been off the vent for 8 days and is still fighting on. She has been moved out of PICU and to a palliative care bed. The doctors said if she survives this weekend then they will discuss discharging her to the school, where she normally boards weekdays.

Faith is by no means better, she is struggling to breathe, is in seizure activity 85% of the time and only occasionally opens her eyes. They  have now stopped doing any monitoring or interventions. The boarding school (which has highly trained nurses at all times) would be a better environment for her to spend her final time, however long that might be, and its closer to home for her family.

Update 26th January 2016

Faith has now been in hospital for a month and it’s become clear that her little lungs have given up. It has been decided that her quality of life has deteriorated in the past year. On Saturday Faith is going to be taken off the ventilator, given relaxing medication and let her slip away peacefully with her family around her.

Update 11th January 2016

Faith was admitted to hospital on Boxing Day with a chest infection. Her airways kept collapsing and she had to be moved to PICU and put on a ventilator. Faith remains incredibly unwell, although she opened her eyes briefly today.

Update 3rd January 2016

Faith was admitted to hospital on Boxing Day and then again 2 days after, we are still here as Faith is suffering with a chest infection. Faith is on steroids and IV antibiotics for her poor chest. We will need overnight stays to do testing again, as her consultant really wants to review her, because her airways are collapsing. Thank you to everyone who sent lovely cards and messages, they really cheered Faith and all of us up. Faith has thoroughly enjoyed the lip balms as her mouth/ lips dry easily and the oxygen dries them even quicker.

Mae loved the gifts for her hamsters and cheeky puppy Rosy.  Thank you.

Update 4th December 2015

Both girls thoroughly enjoying playing with Rosy our new puppy. Rosy loves sitting curled up on Faith’s lap and it keeps Faith warm too!

Update 2nd November 2015

Faith now needs to be nebulised twice a day and needs constant suctioning as her lungs are not functioning very well. She still puts a brave face on everyday, even though she struggles to breathe.

Update 4th August 2015

A massive thanks to Skye from Australia this month for the vegimite chocolate! Spectacular! It was yummy and is all gone. Hopefully she received our thank you emails and her animated cards too.

Faith has been amazing this week considering she has just been in hospital for over a week with her uncontrollable seizures and then chest infection.

I hope everyone is having a good summer.

Update 4th July 2015

Faith went in to hospital for a jejunostomy (stomach tube) and more bisphosphonate infusions (3 times 5 hour ones) for her osteoporosis. It is difficult for her as she suffers with general anaesthetics and gets a fever with the infusions, so we all hope she feels more comfortable very soon.

Thank you for Faith’s lovely paper cut gift through Post Pals. We had a fabulous time at the annual party last weekend too!

Update 31st May 2015

Faith continues to smile, so we are really delighted and trying to take photos all the time to catch them. Faith is thoroughly enjoying her baths and painting her nails. Soooooo girly. Mae helps too and is a great sister looking out for Faith and when she needs suctioning, she helps do it too! Faith still needs loads of suctioning all through the day and night. It keeps us very busy, especially the 2 washing machines which do at least 4 loads each a day!

Mae went on a day trip to France with school up to a light house, ate lots of chocolate, then came home again! I think she practised her French. Both girls are enjoying baking cakes (anything with chocolate) and making smoothies. They are also addicted to Britain’s Got Talent and we are all enjoying watching it together.

Thank you to Claudia for your updates on cute little Ella! She is soooo gorgeous. A massive thank you to Skye in Australia for the slide cards you sent with the animal sounds. So clever and a brilliant gift. Thank you everyone for being so lovely, kind and positive.

Post Pals is a fantastic part of our life and we all feel happier for being a part of it. We really do feel lucky.

Update 1st May 2015

Faith is still smiling and we have had three chuckles now! This is the best thing ever! They are quiet chuckles, but it still counts and we are all thrilled and so happy for her.

Faith made meringues at school and played with some Angel Delight again (strawberry is her favourite smell). Last weekend she had her toe nails painted all colours of the rainbow and her hair plaited and sparkly clips put in. She looked a fabulous teenager. Although I would say that as I am her mum!

Faith is due to have an operation in July on her stomach. We are waiting for more details. Five days in hospital. No one is looking forward to it, especially Faith.

Mae is all examed out. She said she needed lots of chocolate to help her revise. Any excuse! She had her hair coloured pink at the end – a lovely kind Post Pal sent a box of sachets to dip and dye your hair. We did accidentally get it over Mae’s clothes – but it all came out in the wash.

Faith got a lovely nail varnish  from a Post Pal this month, thank you. Thanks also go to Ligang from China for the owl necklace and to Baoshiji  from Shenzhen China for the owl purse.

Update 13th April 2015

Now she is a teenager, Faith is really into having her hair done, accessorising with bows, clips and plaits. She loves having her nails painted – rainbow toe nails are in at the moment! We eventually got around to buying a tangle tamer. They are the best! No more bed hair in the morning. Faith is smiling, especially when the bubbles (spa bit of her bath) is switched on. We have been busily taking photos of these absolutely magical and golden moments.

Mae is busy growing taller! She is really into unicorns and now back into My Little Pony series. I always say, you are never to old to watch 4 hours of My Little Pony on tv! I have to stop her otherwise she would get square eyes. Mae enjoys chasing the chickens around the garden and helping collect their eggs. We love eating boiled eggs!

Update 4th April 2015

Faith has been using the suction machine a lot recently, but wonderfully this hasn’t stopped her smiling. Faith has been smiling the past 4 months now (a big gap before then of 8 years when we had the last proper smiles) and last night Faith actually giggled. We almost caught it on camera. A wonderful golden moment for Keith and I. Mae was asleep in bed at the time.

We are all making chocolates at the moment – melting chocolate so the house will smell great over the Easter Weekend.

A big thank you to Caitlin in Shropshire for the wonderful CDs you send, the soft cuddly dog and audio story book. Faith loves holding the dog in her hand and we have all listened to the audio story book and CDs many times. Thank you Caitlin! Thank you Marioh Erdelkalup from Germany!! I hope we have spelt your name correctly. Thank you to Claudia, Jens and Ella, for your Easter gifts! Thank you Post Pals from Faith and Mae for the Easter card and yummy Easter Egg.

Update 3rd March 2015

Faith has just about got over her pneumonia. We’re still suctioning a lot but really improved. Faith is just starting to get some fresh air – wrapping up well and getting the sun spot in the garden! She loves listening to the birds and especially our chickens clucking (and Mae chatting of course).

Thanks Becky Butler for the super book. Mae ripped open the package and has had her head stuck in the book all evening. Hiya lovely Claudia Meyer. Ella looks soooo lovely and growing up beautifully. Mae loved the owl cut out. She (the owl that is) is sitting happily on our window ledge. Thank you from Faith for all the caring and colourful letters and lovely messages. She loves having them read out to her from all over the country and world. Thank you to Caroline for the rucksack, hair bands, cool pack and book too.

Update 26th January 2015

Faith was due to have Biphosphonate infusions at the Evelina for her osteoporosis but we had to cancel them as she was ambulanced to hospital with unmanageable siesures and put on iv epilepsy drugs, as her ones and other emergency drugs administered at home weren’t getting her out of her seizuring.

By chance they did a chest x-ray and found she has another chest infection, so it’s iv antibiotics. Poor Faith, she is really going through it, especially as her veins constantly collapse and so it was a miracle they managed to get a line in.

Faith has just come home and is on a course of strong antibiotics through her peg. She’s sleepy but on the right track.

Mae and the hamsters are glad to have Faith back as Mae gets very stressed seeing Faith unwell. Keith’s ‘man cough’ is also recovering and all is hopefully settling down now.

Thank you to everyone for their hamster cards, lovely messages and postcards. Thank you Claudia and Becky Butler (please can we have your email). You really make our family life better through your kind thoughts and cheerful messages. Thank you again.

Update 11th January 2015

Faith going into hospital for 4 days for iv biphosphonates as she is severely osteoporotic and hopefully this course will help her get some more strength in her bones. Her hip and leg have turned out recently so we are seeing the consultant and possibly more x-rays.

Faith has finally recovered from her chest infection starting in October. She has had some smiles over the past 2 weeks and we are loving it as it is so rare. Faith loves massages of her legs and feet with creams  – she gets great pleasure from touch.

Mae is getting used to secondary school and lots of nice friends. Mae’s hamster (Popcorn) very sadly died at Christmas time and Mae was devestated so we bought two little dwarf russian hamsters called Yin and Yang. We now have a Syrian called Violet and the 2 little ones. So sweet and fluffy and all very busy on the wheels at night! I think we need to get the free standing ones so we can get to sleep. Mae loves her animals. Faith enjoys feeling their fur too.

Thank you everyone for the spectacular Christmas cards you sent and their special messages from England, Australia, Korea. Amazing! Thank you for your gifts and cards Rebecca Butler! Mae loves the pencil case and the heat up owl – she is definitely going to school with the pencil case this week. Please can you send us your email and address again as we have lost it! Thank you to Becky Rideout for Faith’s cd too as we have listened to it lots of times. Please can we have your email and address too Becky! And lastly, hiya Claudia! Hiya to Hazel and Bev too!

Update 29th November 2014

Faith has just recovered from a chest infection. We were in hospital for chest x-rays but all is okay now. Phew.

We are very excited for Christmas. We have the advent calendars at the ready! We will attempt to bake a gingerbread house next week! Could be interesting and messy.

Thank you for the post recently. We got fab Christmas stickers from Kirstie, thanks!! Thank you to Regina from Switzerland for the super soft and fluffy neck scarf, it is so perfect to keep Faith warm on chilly days. Thank you Bev for the parcel for the girls! I have just got it and will hold on to it until tomorrow! It’s super exciting and beautifully decorated with stickers. Thank you to Claudia for Mae’s Christmas calendar card, she loooooves it!

Update 1st October 2014

Faith is enjoying baking cakes at school and listening to the British Bake Off on television with her sister. The family are addicted to making our own chocolate chip cookies at the moment. Faith sampling the melted chocolate of course! Mae helping at any opportunity to sample as much chocolate as possible too!

Faith has also been enjoying walks out with her wheelchair, crunching over the autumn leaves (and dodging dog poop!) and loving being a teenager!

Update 4th September 2014

This is a very exciting month for Faith. She becomes a teenager! Thirteen on the 13th September. Faith went on the London Eye and a London Thames Cruise for an early birthday trip with the family. She loved all the sounds and wind in her face. Very windy on the Thames! Mum will try and make a London Eye cake for her birthday – try is the word.

Faith has enjoyed the last few days of summer holiday going for walks in her wheelchair to the local parks and lakes with her sister Mae. We saw some ducks today and lots of friendly dogs. We always have to stop and stroke them.

Update 29th July 2014

Faith has finished another year in secondary school, it was a wonderful celebration day and a certificate was awarded to Faith for her good communication skills with the school ipad! Well done Faith.

She has been pampered thoroughly so far this summer holiday – nails and fingers painted lilac, and her hair in plaits, bunches and amazing styles. Well, she is nearly 13!

Mae has been swimming and in the paddling pool in the garden, playing with her build a bear and styling Faith’s hair. Oh and of course, the compulsory lounging around in your pj’s for as long as you can while watching tv!

Update 3rd April 2014

Faith is doing well at the moment. She’s still struggling with managing her seizures though. Lots of new meds are being tried to try and prevent Faith getting stuck in her seizures.

Faith is now only just tolerating her feed properly after her spinal surgery back in November. Horrid reflux and not taking in enough fluids meant she was over heating. We have been very gradually increasing it so she doesn’t gag too much. Otherwise it is projectile milk everywhere!

Faith has been very productive at school making a paper Easter chick basket, a fluffy tailed Easter bunny poster, and planting seeds. Faith loves to cook with chocolate (loves the warm smell of chocolate melting) and the feel of it in her fingers. Anything messy really! All tactile. She is having hydrotherapy at school which gives her the freedom to move easily in lovely hot water, it is so good helping her muscles relax. A real mermaid floating around.

Faith and Mae will have an Easter egg hunt around the garden, although they know all the good hiding places. Nothing like being outside for a bit of fresh air as it blows the cobwebs out. We will also be making some Easter chocolate lollies – again, melting chocolate!!

Mae is keen on hamsters (as she is a very responsible owner of her hamster, Popcorn) and at the moment is interested in (addicted to)  McDonalds monopoly stickers.

Update 3rd November 2013

Faith’s surgery was canceled after we had left for the hospital. She will now have it this week.

Update 22nd August 2013

Faith will be going into the Evelina hospital for her surgery on Wednesday 2nd October 2013 to have her spinal surgery on Thursday 3rd October. She will aim to be in the Evelina until Monday 7th October provided she doesn’t have any lung complications as with her previous operation.

Update 2nd May 2013

Faith is having another spinal surgery and it should happen within the next 12 weeks. She is having some bolts cut off /shaved and some moving /adding of others in the lumbar region. The reason for this surgery is because Faith can only currently sit in her wheelchair for an hour before having to come out of it and side lie as her lower back swells up and she is in pain. This makes it impossible for Faith to ever go anywhere and also the fact that Faith is now unable to tolerate lying on her back because of the pain.

We don’t want Faith to have to go through the pain of an operation again so we’re feeling really sad about it all.

Update 17th April 2013

Faith is just recovering from her gastro peg replacement operation. Her back is improving from the spinal surgery – but we still have to have her lying on her side after every 1 hour in her wheelchair as her back begins to swell up! Never mind. She went for a walk in her wheelchair in the sun today. Almost ran over a dead frog! Poor thing.

Faith is having a pampering haircut session in ten minutes and then snuggled up to bed. She loves a head massage and I will give her a foot massage too! Mae is running around the house very loudly and will have a hair cut too. Both enjoy playing in water. Mae leans over the bath when Faith has one and helps shampoo her hair. Faith has the cleanest hair in the house (at least a hairwash a day!). She will have her nails painted later too. Mae is busy eating chocolate from Easter! And ‘busy doing nothing’ she tells me!

We have central heating now too. Six weeks with a broken boiler and only fan heaters to warm us all. Luckily Faith has an electric blanket!

Daffodils and other flowers are out in the garden. We love bringing them in to the house for everyone to enjoy, especially smelly ones (roses etc) for Faith.

Update 23rd December 2012

Faith is recovering well from back surgery. However, she has a swollen lower back. The screws from the spinal pinning seem to be in place, but one may be rubbing the skin around it.

Faith can enjoy her baths now and being at home with her family and Mae.

Faith loves the Christmas lights and is busy listening to Christmas music and Mae, her sister, pulling numerous crackers!

Merry Christmas to everyone at Post Pals and thank you!

Update 4th April 2012

Faith is having her VNS (vagus nerve stimulator) battery in her chest changed in Kings Hospital in the middle of April. She is also on the list for major spinal surgery. We will only be given 8 weeks notice prior to surgery and it will have to happen before this November 2012 when her severe scoliosis (crushing her organs) will have fused so surgery cannot happen after then. She will have 6 months to a year recovery. We are all extremely anxious but will have to wait for the date that could be any time. Her seizures are also keeping us very busy all through the nights at the moment. Not good for the bags under my eyes.

Debbie sends lovely cards and gifts to the girls. She is great. Claudia from Germany has sent us Lush cosmetic products so our house smells divine. Mae is crazy on cooking at the moment and drawing. Faith is enjoying the music cd’s people send (thank you all!) and being pampered. Thank you to all of the wonderful people sending cards and gifts as it makes our day. The post is so exciting now!

Hope you all are okay and Happy Easter.

Update 27th October 2011

Thank you ever so much for the Halloween packs. We had screams of delight from Mae, and Faith had her ‘interested/what is going on’ face! Mae is putting the sticky bat and spiders in the porch already! They loved the spider web, bubbles and glow sticks too! It was a great surprise, thanks. Mae loves the skull ring lip gloss and Faith has ‘tracked’ the wonderful pumpkin glow stick. The best ever gift bags I have seen. It must have taken lots of hard work getting everything together. Tomorrow we are making the ghost chocolate lollies from the book!

Faith is getting a bit better every day. We’re just waiting to find out if her 2 scars are infected. She also has thrush from the antibiotics – not surprising.

Update 13th October 2011

Faith still has a temperature and is off epidural now. She is being sick but they are not sure if it is the morphine or infection. They will decide if we come out tomorrow (Friday) but it’ll probably be Saturday or Sunday. I will keep you posted.

Thanks for our post. Mae loved the Japanese card and we’re going to find out what it says.

Update 1st October 2011

Faith has had her pre op assessment (bloods, X-rays, etc) and it is all go for the hip reconstruction on 11th October!

Faith has enjoyed being in the garden lately with her feet in a bucket of cool water. Her sister Mae joined in and splashed everyone.

The cards, personalized or handmade, are super and so so clever. Thank you everyone for your kindness. All letters are so lovely to receive and exciting to see them arrive by the postman. Faith received a super light up lamp – thank you. It is a multicoloured lava /glitter lamp and is brilliant. It can go right up to her face and lights it up and Faith loves it! We have also just received the letter about Dotty the Dalmatian and the girls are both so excited about getting a puppy in the post! Thank you.

Update 12th September 2011

Faith is having a complicated operation on 11th October. She is having her leg (femur) broken and a triangle taken out of it and a bone graft from her hip bone to reform her ball and socket joint. She will have to have rehabilitation for a month and lots and lots of pain killers. This is because her bones are like honeycomb and crumbling inside and her hip is about to dislocate if she does not have this operation to re-align it.

Please could everyone send her good luck and wish her well for the operation. It has been a year in the planning and fingers crossed it all goes well.

Seraphina has a phobia of music boxes and similar sounding music and cannot eat or drink. Please do not send her food or drink items

Story written 2010

Seraphina was born by emergency section at only 25 weeks gestation and weighing a mere 760g. She fought hard and after 4 and a half months in Special Care she came home. The stay was short lived however, as after only 3 days she suffered a massive aspiration and was rushed to Intensive Care with an aspiration Pneumonia. It was there she was diagnosed with chronic Gastro-oesophageal Reflux. She was put on medication and fed by NJ tube but this didn’t help and so she had a fundoplication operation and a tube inserted a few months later. It was also discovered she needed supplemental oxygen. Since then she has put on weight nicely and developmentally progressed well mentally, but a lot more slowly physically. She was diagnosed with Cerebral Palsy (spastic diplegic) just after she was one.

Things were fine until she was 18-21 months old when she stopped making progress and lost all her speech, she became withdrawn and avoided eye contact. She lost the ability to walk and then stand.

She was hospitalised for almost 3 months last November with a twisted bowel /bronchiolitis and Pneumonia. She ended up on a breathing machine over Christmas and New Year and once again we didn’t know if she would pull through. However, she surprised us, and after emergency bowel surgery and a period on TPN she was able to come home.

She is in and out of hospital quite a bit with chest infections and bowel problems which is something she finds really frightening and she is on lots of medication (currently about 25 doses a day).

Recently we have found the reason for Seraphina’s loss of skills. She has been diagnosed with Rett Syndrome – a horrible Genetic disorder which mainly affects girls. She cannot speak anymore but is beginning to communicate using eye-gaze and will let you know in no uncertain terms what she likes and dislikes. She also has a very infectious giggle and the most wonderful smile which lights up the room!

Update 22nd July 2026

It’s been a while since our last update, Seraphina has now thankfully got her DFG done after many years wait. She now has a lovely Disney “The little Mermaid” bathroom with a high lo bath and a Disney Princess Bedroom with ceiling track hoist which has made moving and handling much easier!

We have also ‘mostly’ transitioned over into adult care which is very different from Children’s and very strange and scary for Seraphina as she is chronologically 19 but very definitely neurologically still a little girl… she has recently been going through another ‘regression type phase’ and has lost things she previously knew so realistically she is functioning at 4-5 years rather than previously 5-6 years. It’s sad and we aren’t entirely sure why.

Thankfully we now have a lovely adult Gastro/ intestinal failure consultant and it certainly seems like they will do the very best for her at the IF unit. She’s seen the pain team and had her medication increased and was started on a medication to thin down secretions that were becoming very bothersome and making her regularly vomit. This was working fairly well… until it went out of stock and apparently will be out of stock until mid 2028… not really the news we wanted so we are back to square one with secretions.

She has also recently been diagnosed as Asthmatic so we are a week or so into beginning treatment for this.

Life is very much day to day as to what she feels up to & due to anxiety, pain, frustration can be quite challenging from a behaviour point of view but we try to distract, reassure and help as much as we can.

We’ve just been given to go ahead for me to train my eldest daughter to put up  Iv fluids so that will be helpful once she is able to assist.

Thank you so much to everyone who has sent Seraphina post. It really helps distract her & give her something else to focus on particularly when we have hospital visits for treatment of which we have two different treatments every 6 weeks or so at different hospitals which she really doesn’t enjoy.

This month ( July ) we have actually got 4 different hospitals to go to so it’s going to be particularly challenging as Seraphina currently hates leaving the house. Each time she receives post it really does mean the world to us so Thank you!!

Update 14th November 2025

It’s been a while since our last update… The end of 2022 and beginning of 2023 were spent in hospital, as Seraphina’s weight had dropped by over 10 kilos and her bowel had completely shut down. Unfortunately, we had to wait at home for a bed to become available in our children’s hospital, and that added to her decline. Needless to say, she ended up back on TPN, many painkillers, and had surgeries for bladder stones, the placement of a suprapubic catheter, as well as other investigative surgery, coupled with treatment for pancreatitis and adrenal insufficiency.

When she eventually came home, we were only back for a week before she had to return for another surgery, which resulted in a hole in her bladder and a very severe case of sepsis. It was at this point we were placed on palliative care, and we very nearly lost her. Even writing about this period many months on is upsetting and has deeply affected both of us. Seraphina eventually came home again, but the mental scars left by this admission meant she became fearful of medical professionals and hospital appointments. Even leaving the house for a walk was a no-go due to extreme anxiety. This was compounded by the loss of our beautiful St. Bernard, Duggee, at the beginning of this year. She was extremely close to him. He was named by her after Hey Duggee, and to this day she won’t watch Hey Duggeeanymore, and all the toys had to go. This was a very sad period for her.

We quickly decided, because of how upset she was, that she really needed another friend to help her through it. So in the middle of May, Happy the St. Bernard puppy came to live with us, and soon after began his training to become her assistance dog. It has been a very long and slow process for her to begin going out again, and Happy has helped enormously. He takes his training so well—he pops in and out of her room to “check” on her and even helped her start having her teeth cleaned again because he was having his cleaned too!

As for an update now, we are finally in the middle of having her DFG done, which will mean access to a downstairs bathroom and a bigger bedroom to cope with all the extra medical supplies she now needs. It will be much easier to care for her with a ceiling track hoist and the downstairs bathroom and shower.
Obviously, the bathroom has to be Disney The Little Mermaid themed, and the bedroom Disney Princess!

Unfortunately, as I write this, Seraphina is having the biggest bowel flare-up since 2023, and we’ve had some bleeding in her nappy. Pain control is difficult, so understandably she isn’t very happy. Secretions are now a long-term problem as well, with her needing her gastrostomy button “unblocked” (because they get so sticky) and her stomach drained/degassed every night—sometimes more than once a night—along with her airway cleared. The hospital is aware of the current flare-up, and I’m currently waiting on a call back from them with a plan. I really hope they can help sort this out quickly.

Thank you to everyone who has taken the time to send her happy post. She really does appreciate it!

Update 23rd November 2022

Healthwise Seraphina is probably the most ‘unstable’ than she’s been for some time.Back in May she had exploratory surgery/ biopsies done to try and find a cause for her pain. This revealed that dispute immunosuppressive treatment and steroids, Seraphina’s bowel was full of bleeding ulcers. Clearly her treatment had stopped working. She has climbed the scale of pain medication & is now on pain patches, morphine and gabapentin to try and keep her comfortable.We also found out her scoliosis had progressed ( another source of pain).She was put on more steroids both oral and IV. Unfortunately a side effect of this was spending the next 2.5 months on IV antibiotics due to back to back infections and see sawing blood sugar levels which required trips to hospital.She’s also having investigations into her kidney function due to repeated Urine infections and it has been suggested that she may benefit from a permanent catheter.We also have an appointment at the beginning of December with the surgeons to discuss complete removal of her bowel as it’s thought the disease load is too much for her body to cope with and contributing to us not being able to get on top of her inflammatory bowel disease and arthritis. Currently we are having more fluids IV as she’s not tolerating full feeds and have been having issues with low potassium levels due to increased output from her stoma/ stomach.Today we found out that her IBD and Arthritis is affecting her eyes and is the cause of the redness/ soreness/ photophobia she’s been getting .She was due to have more steroids today to try and reduce inflammation but frustratingly the doctors have discovered she has another infection so she can’t have the steroids, instead it’s more IV antibiotics which means that instead of going somewhere nice for her birthday she will be stuck on IV’s. I’m so sad for her right now as we were so hoping to celebrate her 16th Birthday doing nice things.On a positive note her OT secured funding for a lovely electric reclining armchair which she has just had delivered and she calls it her ‘throne’… she says she’s a real Princess likes wearing tiaras/ crowns and thinks it’s funny when we call her ‘Your royal highness’ 😄

Seraphina now loves Encanto, collecting sparkly tiaras (she calls them princess crowns), the colour pink and hair accessories.

Thank you to everyone who has taken the time to send Seraphina post. It really does make a huge difference to her and it’s so lovely that she is being thought of.

Update 30th March 2022

.Seraphina has had a bit of a tough time the last few months with infections & arthritis flares.
Her inflammatory bowel disease isn’t well controlled either. Initially her morphine dose was increased to help with pain control from this.

She had a review of her scoliosis which once again has progressed, however only slightly so once again it’s a waiting game to see what happens in the next few months as she gets closer to 16. The knock on effect of a worsened curve is that her jejunostomy now sits in a ‘dip’ due to the way she sits and is constantly leaking/sore & gets repeated infections which isn’t fun for Seraphina. We do have dressings and cream to help with this. She also now has a moulded wheelchair to help support her in a better position.

In February her gastroenterologist whom she’d had since a few months old, left the trust so we now have a new one. Thankfully she seems lovely and on meeting Seraphina she ordered a whole list of tests which we are waiting on results for & has also referred her to the pain team as her morphine isn’t currently controlling the pain from her bowel (which has started bleeding again intermittently).
They are also considering switching her immunosuppressive treatments depending on these results. At the moment she is also on IV steroids but this isn’t something that can be considered long term.

The other thing Seraphina is currently struggling with is pressure sores… because she’s not been absorbing feed as she should, she has lost weight which means she developed sores on the base of her spine. We are currently treating them with cream and dressings but long term higher grade pressure relief is being looked into for her bed and chair.

One bit of good news is due to our new OT we have had funding agreed for a brand new specialist care cot for her.. she was even able to choose the colours for the padding… she’s gone for a rainbow theme with 10 different colours (one for each panel around the sides of her cot ). She’s a big fan of rainbows & things that sparkle so we’ve bought her a sparkling rainbow blanket to go with her cot when it arrives!

Thank you to everyone that has sent Seraphina post recently, she absolutely loves receiving it and it really does bring a smile to her face even on the toughest days! We have to sing the “we just got a letter “ song from Blues Clues each time post arrives!

Update 17th October 2021

Seraphina has found the pandemic situation extremely hard.. We started shielding at the beginning of March 2020 and due to her state of health & immunosupression we were advised to continue shielding until she has had all 3 vaccinations… currently she has had only one so trips outside even within our little estate are very few and always with a mask etc.

During the past year she has needed two surgeries one of these was during the first lockdown to replace her current central line with a bigger one.
We also now go into hospital every 4 weeks for an infusion of a stronger immunosuppressive treatment along with IV steroids to try and keep her inflammatory bowel & arthritis under control as well as her weekly injections at home.

She still experiences intermittent bleeding from her bowel & pain from her reflux and the hospital is aware that she needs another endoscopy/ colonoscopy but are holding off until it’s safer to do so. She is still having iron infusions when necessary.

She has had a spinal review which has shown her scoliosis has progressed and she has been cast for moulded seating to help with her positioning and hopefully make her more comfortable when sitting.

She has also had an orthopaedic review as there was some concern over whether her hips were in the sockets correctly, thankfully yes, they are. The pain she is experiencing is from arthritis in one of her hips.
Thankfully her morphine dose was increased at the beginning of this year to help her cope with the various causes of pain/ discomfort she has.
All this combined with being prone to repeated infections ( as I write this she has just been started on another course of IV antibiotics) has meant that at the moment she has become quite down at times despite our best efforts to keep her entertained & distracted.It can be very difficult getting her to understand her situation as she it in effect ( mentally) a 5-6 year old in an almost 15 year olds body!!

We have decided to rejoin Post Pals to give her a bit of a boost & so hopefully she realises she’s not on her own & people are thinking about her & hopefully make her feel a bit brighter.

Update 20th May 2019

Seraphina and family have taken the decision to move on from post pals.

Update 24th April 2019

Seraphina is still very much in and out of hospital with infections so life has been quite busy, although we are thankfully able to do IV antibiotics at home so she hasn’t stayed in longer than necessary as we can continue treatment at home.

She is currently feeling a bit sorry for herself as she needs a transfusion due to bleeding, but that is hopefully happening on Friday so she should perk up a bit after that.

Her arthritis is still not well controlled and now neither is her inflammatory bowel, so once again on Friday we need a way to move forward with treatment. Her hands are particularly swollen at present.

We haven’t been able to go out and about much due to infection risks (we had a phone call to say her white cell count and neutrophils were too low), however we did bite the bullet and take her out on Easter Monday to a local Easter Egg hunt at a country park where she was able to find plastic eggs and then (thanks to a lovely lady in the bookshop ) exchange them for a story book of her choice instead of chocolate 🙂

Thanks to everyone who has taken the time to send Seraphina cards and gifts. She really does appreciate them!

Thanks to Wendywoo for the Easter bike bag holders, Nicola for the Easter decoration & Maya Palmer Green for writing Seraphina a little story.

Also special thanks to the Pencil genie for the lovely Chihuahua drawings! 🙂

And thanks to PostPals again for the musical hippo light show which is still put on EVERY night and in the daytime when she’s in pain even with sore fingers she can still switch it on 🙂

 

Update 17th September 2018

It’s been a very busy few months here. Seraphina has been backwards and forwards to hospital quite a bit with various infections (mostly UTI’s) and needed IV antibiotics. She also had some investigations done under anaesthetic as she had some bleeding from her oesophagus despite medications added in for suspected return of reflux.

The results of these were that yes she does have bad reflux again, however she has had 3 operations called ‘Fundoplications’ previously as well as multiple other surgeries so it was felt by the hospital to be far too risky to try and do another as her risk of rupture/other complications due to the fragility of her GI tract/scar tissue is very high. Her gastrostomy is now on drainage all the time to try and prevent aspiration, however despite this she is uncomfortable most days so we need a plan regarding this.

She has also been having a reaction to one of her immunosuppressants, and her arthritis isn’t at all well controlled at present (another cause of pain) so it has been decided to put her on steroids to try and get a handle on things and if things haven’t improved by the beginning of November we will have to discuss alternative treatments.

As a result of her being uncomfortable for various reasons she has unfortunately started to ‘self harm’ in the form of repeatedly scratching her palms/trying to bite, so we have been advised to have a referral to a specialist OT who can perhaps provide wrist splints to try and protect her hands a bit whilst we try and get on top of the discomfort.

In other news, Samuel has finally got help at school having got a diagnosis of Autism. This is a huge positive step as he has been struggling but school are being very good with him!

Thank you to everyone who has sent post to Seraphina, Samuel and Eve! Special thanks to Quangle Wangle for the beautiful bile bag holders & Beverley Rudd for the unicorn lights!

Update 16th March 2018

Since the new year quite a lot of time has been spent trying to transfer all her care over to our new area, not quite managed all of that yet as funding needs to be agreed for new syringe drivers etc but getting there slowly.
Of course in the midst of this Serapina decided that she woould scare myself and her sisters by suddenly losing consciousness in her bed and require an ambulance…. it was discovered that she is having issues maintaining her blood sugars, we already knew that she could drop her blood sugar quickly but now we are having high blood sugars as well. we now have a ketone monitor as well as a blood sugar monitor to help keep an eye on this while they work out the cause, she has had various tests including a scan of her pancreas.

Seraphina has had quite a few hospital trips monitoring her scolliosis… she has now slight rotation in her lower spine, her Arthritis ( one of her immunosuppressant has been doubled ) and her weight/gastro function.
Thank you to everyone who has sent her post especially Ellie Ewbank, she loves the girly parcels and the photo of the Labrador who had shredded a load of presents really made her giggle!

Thank you also to whoever sent Samuel the guiness book of records gamers edition.. that was a HUGE hit!

Big thanks to everyone who sent Eve post for her Birthday.. th Harry Potter stuff was an extra special treat and really helped as she is struggling to settle into her new school and misses her friends in her old school.

Thank you again to everyone who has sent smiles to our family.

Update 30th November 2017

Seraphina initially had a rough few weeks with gut issues & not feeling great. We are moving house in 2 weeks and so been liasing with local services to get them transferred to a new area. This has actually worked out well as her height and weight have been reviewed in light of her not being able to absorb as much feed and she’s been put on an additive which we put in her tube feed to help her gain weight & is on monthly ‘weigh in’s’ to keep track. Couldn’t quite believe that she is actually 5 foot tall now!, such a huge difference to the tiny 1 lb odd preemie who fitted in my hands!.

She’s also now got a new wheelchair with gel padding and memory foam in the seat & back to help protect her hips/ bottom & spine from pressure. She’s just celebrated her 11th Birthday, thank you so much to everyone who has sent her post. We are up in Sheffield again shortly to see the spinal surgeon again regarding her scoliosis so hoping it hasn’t progressed any further.

Update 31st July 2017

Seraphina has unfortunately lost most of her mobility now. She was assessed for a walker back in March but when it arrived in June she was no longer able to use it. Her legs have been splinted & she has special boots which we hoped would help along with extra straps on the walker to support her but it’s just too much for her and so she is now 100% wheelchair dependant.

She has also been unable to go horse riding which is something she has missed a lot but currently she isn’t strong enough from a trunk control point of view and her lack of mobility causes issues.

We’ve also had an increase in seizures & she has gone very thin. After discussing with one of her consultants he suggested it may be a progression of Rett syndrome as she begins to hit puberty. Increased seizure activity, muscle wasting & loss of mobility along with increased breathing abnormalities can be symptoms at this time.

She has been cast for a new improved ‘Sleep pod’ with gel cushion inlay along the base of her spine to help with the pressure sore issues associated with her being so much skinnier.

We also have an appointment to reassess her wheelchair as her lack of trunk control & scoliosis means that it’s no longer offering her enough support. We are hopeful that they will come up with something to make her more comfortable.

As we are still struggling with keeping Seraphina comfortable despite regular catheterisation she is now on antibiotics each day which should keep infections at bay. Unsure at the moment if she is on the correct one as she’s still quite uncomfortable at times but leaving it a bit longer and using regular pain relief to help.

Update 29th March 2017

Seraphina is generally doing ok from a gut point of view. We are managing her symptoms pretty well with her medications and iv’s. She has just had another transfusion to boost her iron levels which still regularly drop.

She is due to be admitted for an open ended/ long stay on 9th April under Urology/ surgeons as she is still having issues in this area & blood sugars , so we are gearing up as a family for having a period of time apart.

Seraphina’s condition is lifelong and will always have up and downs/ new developments and therefore after a lot of consideration we have decided to leave Postpals and give some of the sicker children like those with cancer that Postpals is more geared towards, a chance to benefit from everything that makes Post pals so special.

Thank you so much for all the cards/ post, love & support Seraphina and her siblings have received

Update 18th November 2016

Seraphina has been up and down to hospital a bit over the last couple of months with urine infections, gut flare up, urology investigations and more recently investigations into her adrenal gland function as there is a concern that it is no longer functioning as it should be and whether this is the cause of her sudden drops in blood sugars. We are waiting for the results of these tests.

She did manage to go on one of the fantastic Post Pals Chessington trips which she really enjoyed, especially seeing all the animals. Thank you to Nationwide Building Society in Northampton, Swindon and Bournemouth for Seraphina’s parcel of comics, cards etc and to Chayah Nechama Brontin for her lovely letters/cards.

Update 7th June 2016

The new drugs for Serphina’s arthritis seem to be working well and she is tolerating them without nasty side-effects which is great news.

Seraphina has been not doing great gut-wise, she has struggled with her intake of feed and has had two bowel bleeds which meant she had to go into hospital to have a transfusion. She has been very tired and wanting to spend a lot of time in bed again and has dropped a centile on her weight chart. Her blood sugars have also been erratic and the dietician /consultant believes she is ‘dumping’ her feed which means she sweats/blo0d sugar drops and she doesn’t absorb any of the calories/nutrients. She has been referred for investigation on her pancreatic function to see if her body is able to produce the right amount of insulin.
She is also having continuing problems with bladder and kidney function and it has been suggested that her bladder is behaving just as her colon did when it started to fail. She has been referred to a specialist urologist and has been on IV antibiotics and 24 hour IV fluids for the last week along with 2 opiates for pain relief.

Update 22nd January 2016

Unfortunately, Seraphina was poorly all over Christmas. We had an emergency consultation with her Rheumatologist on Christmas Eve, as Seraphina had had a line infection and urinary tract infection for which she had been on IV antibiotics and this had meant she couldn’t have her arthritis/gut injections. By Christmas Eve she was unable to stand as her joints had flared up badly and she was just lying in bed crying with pain. She was also unable to tolerate any feed at all so back on IV fluids and needing Glucogel/IV glucose to control her sugars. Thankfully, her Consultant suggested some tablets to help with her inflammation and pain and within 48 hours or so her pain was more manageable.

We were back in Sheffield at the beginning of January where she had an assessment by the whole team. Unfortunately, after this recent flare she has been left with restricted movement in both knees and both elbows.
From a feed point of view we continue to struggle to get her to tolerate enough and questions have been raised about putting her back on to full TPN. However, we are hopeful that once her new injection has had chance to take full effect she will tolerate more and regain some of the weight she has lost.
Her physio has been out and her sleep system has been sent away (and returned) after being made more comfortable and safer for her when spending extended periods lying down. Hopefully we won’t have any more pressure sores on her back.
Thankfully, she has started to make progress over the last week or so and we are having a bit more time out of bed again since restarting all her medications.
Thank you to everyone who has sent Seraphina happy post over the last month!

Update 29th November 2015

Seraphina has had a rough few months so is rejoining Post Pals. She had an emergency hospital admission in August with all the symptoms of an obstruction, which triggered her seizures. The hospital rehydrated her as she had lost a lot of fluid and she was discharged back on TPN (intravenous feeding which she has been on for 4 years). The consultant is querying whether it was another volvulus (intermittent twist in her bowel), but as yet we are unsure unless it reoccurs.

When Seraphina had recovered from the admission we tried tube feeding her again but she continued to struggle to tolerate enough calories and fluids. She had begun to have problems passing urine, so the decision was made to put extra fluids up intravenously each night.

Seraphina’s arthritis was also causing problems with her hip and lower back and investigations showed that she has crumbling arthritis in her hip and it is still active despite her injections.

As it currently stands, her gut is also flaring monthly so we now have glucose, potassium, etc., in intravenous bags to rehydrate her and give her gut a rest when she stops tolerating feed. She has also begun having more problems with suddenly dropping blood sugars, so we have Glucogel for these instances.

Two weeks ago we began trialling another drug (a biologic one) to further suppress her immune system and try and get a hold on the bowel and arthritis issues, as she had become too tired to horse ride. She only managed a couple of hours up out of bed each day before needing to go back to bed and lie down and rest. Unfortunately, just as the treatment started she developed an infection round her central line (the line which goes into her heart) and so she has been on IV fluids and 3 x 30 minute infusions of antibiotics each day to try and clear the infection. A side effect from this has been that she has not been able to have any of her immunosuppression/arthritis drugs and her tummy and joints have been particularly painful. She has had a few days of being rather upset.

We are hoping that once the antibiotics finish she will be able to restart her medications but, until then, she is requiring lots of pain relief.

Update 24th March 2015

Seraphina has made significant progress on enteral feeding since she had her ileostomy and fistula operation and is managing periods of tube feeding again. There is some concern about her managing to maintain her weight off TPN completely but she is being closely monitored. Unfortunately she has started having bowel flare ups again and her arthritis is not very well controlled, even though her colon is de-functioned, and we have had a couple of episodes of bleeding. The option of complete colectomy has been discussed again and may be something we have to consider, as is adding a biologic drug as well as her other drugs, to further suppress her immune system and control flares.

She has also got a back brace now as her scolliosis (spine curvature) has progressed. So far she’s not too impressed with wearing this.

Despite all that has been going on she has maintained her smiley, giggly outlook on life and is still doing her horse riding which is the highlight of her week. Home schooling is also going well. She now has her own eye gaze unit and is learning how to use this to communicate at home.

We have decided to move on from Post Pals now but want to say a big thank you to everyone who has sent Seraphina and her siblings post and created many smiles over the years.

Update 9th July 2014

As I type this update Seraphina is in theatre. She is having her bowel de- functioned as it no longer works. She is also having some procedures done on joints which still have active arthritis despite the many medications she is on.

Mobility-wise she has been miraculously back on her feet without the use of a gait-trainer and has even begun to do horse-riding with her wonderful Carer holding her on the saddle. She absolutely adores the ponies and anything to do with horses or ponies is a hit right now. She has also been learning how to use Tobii eye gaze technology and has such a lot to say! We are currently fundraising in association with The Sequel trust to raise enough to get one of her own.

We are praying this surgery works as it is her very last chance to be able to feed again.

Update 8th March 2014

Seraphina continues to have pain and problems with her bowel/sepsis including one very nasty episode at the very end of January which involved her being transferred from High Dependency in Coventry to Birmingham Childrens as she was too acute to transfer to Sheffield. The sepsis once again was found to originate in her bowel. She also suddenly lost the use of her right arm which also became very painful, so bad in fact that her morphine infusion had to be changed to Fentanyl and Ketamine just to try and keep on top of the pain. She was eventually diagnosed with Rheumatoid Arthritis (sparked off due to her inflammatory bowel disease not being well controlled) and given IV steroids to bring down the swelling in her joints. This worked well until it was stopped and the effects wore off… then both her arms and legs, fingers, knees, etc, all swelled up and became painful. So strong anti-inflammatories were prescribed to try and bring it under control.

The last few weeks have been a balancing act to just keep her stable until her admission to Sheffield for multiple procedures on Sunday (9th March) with surgery on Monday. We are praying that all goes smoothly and we end up with a positive plan of action/way forward in her treatment both of her IBD and Arthritis.

Thank you to Kerry and Mark for Seraphina’s story books and bookplates especially the ”Tangle Fairy”… you must have seen Seraphina’s hair first thing in the morning!! Also thanks to Karen and Toni for the lovely Webkinz Koala.

Update 12th September 2013

Seraphina is still very much up and down and for the last few months has developed unexplained temperatures/repeated sepsis associated with her bowel. She has been in hospital several times with these and once ended up in HDU/ICU. She has had a lot of her medications increased and switched to an IV form as she wasn’t absorbing well through her gut.

We had a conversation with GOSH gastro consultant and a letter saying they were unable to treat Seraphina as they didn’t feel they could offer anything to improve things which was a big blow as we had pinned our hopes on GOSH ‘specialists’ being able to improve her quality of life. We are now waiting an admission to Sheffield Children’s to reassess her bowel and look at possible removal of her colon.

Meanwhile, her sister, Lydia, is having surgery on her legs on the 25th September. However, during the pre-op they found a problem with her heart which may need corrective surgery. We have an appointment about this on 17th September. Understandably Lydia is quite anxious about this and her operation.

Huge thanks to Kim Lawrence for Seraphina’s monthly projects and the wonderful cushion. Thanks to Karen (sami’s) friend for the little toy baby unicorn too.

Update 6th June 2013

Yesterday Seraphina was rushed to hospital with septicemia and placed in ICU. She had the night from hell with fits, heart rate of 180 asleep ,temp of 40.5 and struggling to breathe. They have decided to stop using her central line and cannulated at 3am. Temp now responding to paracetamol and lower. Slight technical hitch is she’s no longer weeing despite fluid boluses and blood pressure still low. So puffy she can’t open her eyes properly, bless her.

Update 10th May 2013

Seraphina is going through the mill a bit. She’s currently on 9 intravenous drugs a day. She is fighting a kidney infection and a staph infection/cellulitis around her line. She has had her morphine levels increased and now her bowel has started with a nasty flare up. Sheffield have started her on high dose steroids today to try and calm things down as she is having significant bleeding in her bowel. She is quite drained and fed up and teary today.

Meanwhile, her sister Lydia (who has scoliosis and syringomielia) has had her orthopaedic review and they have decided she needs something done surgically on her legs. There are two options for surgery but both involve being in plaster from hip to toe for about 8 weeks. Understandably Lydia is more than a little worried about this. Your prayers would be much appreciated for both girls. Thank you.

Update 8th May 2013

Seraphina has been very much up and down over the last couple of months. Some days have been brighter than others. At the end of March we went to Great Ormand Street hospital for an assessment. En route, Seraphina decided to stop breathing so we were ushered off the motorway and ended up being blue lighted to hospital with a police escort! The cause for this episode was found to be a urine infection, of all things, which triggered seizures. The assessment was very thorough, the consultant said they had seen only one other child like Seraphina. Unfortunately they had not managed to ‘fix’ the other child which was a bit of a blow. We are now waiting for an admission for further tests, although the general opinion is that colectomy is the way to go.

Sheffield have also seen her and due to increasing bowel pain they have increased her morphine and added in some other intravenous drugs. As I type this she is battling two infections… another urine infection and now an infection around her central line which we are hoping hasn’t spread into the line as well. The last couple of days she has been sleeping more and tiring much more quickly which she finds frustrating as she wants to do stuff but her body just won’t let her. We are praying for an improvement soon.

Thanks to the Lawrence family for the lovely Tiger who came to tea story sack.

Update 22nd January 2013

Seraphina had a good Christmas health-wise, she remained pretty stable and her Christmas present to us was her starting to walk (something we had been told she would never do). She is very wobbly but it is so fantastic to see.

Just now she is struggling again. Under the hospitals direction we decided to try and see if her body would accept blended food in very small amounts, with a view to reducing and eventually getting her off TPN. It seemed to go very well for a short while and her stomach emptied, but it seems that her bowel just doesn’t want to function and so in effect we just ‘fill it’ with food which doesn’t go anywhere. She then needs laxatives, gut medicine and suppositories to get it to come out the other end. Her Consultants are still wondering if she would be better off if they removed her colon but GOSH experience with Rett girls says that the bleeding etc just moves up to the small bowel and stomach in these cases, so it is difficult to know what to do for the best. She’s having increased gut pain requiring morphine and today bleeding again from her bowel, and she also has Ecoli in her urine which still hasn’t gone despite two courses of antibiotics.

We were also meant to go up to Sheffield for a transfusion but unfortunately this has had to be postponed due to the snow, with a result of Seraph being increasingly breathless and dizzy, so she’s not feeling great. She has cried on and off all day today which is definitely not her, so she must be feeling rubbish. Praying that a new date isn’t too far away.

Thank you so much to Seraphina and her siblings Christmas Elves. Your lovely presents and cards raised many smiles. Thank you also to the anonymous person who sent a parcel of crochet goodies including a black cat and a little rucksack. They are beautiful and must have taken so much time to do – so thoughtful.

Update 22nd June 2012

Seraphina is still waiting for admission to Great Ormond Street. Sheffield have said that there isn’t anything more they can do for her and so a second opinion has been sought from GOSH. Unfortunately GOSH have had a bed situation and Seraphina’s admission has been cancelled twice so far. She is still totally TPN fed. She is also now on IV medication twice a day as she has had problems with persistent hives and itching. She continues to have bleeding intermittently and she has had problems with pseudo-obstruction in her bowel, the periods of ‘stability’ are becoming shorter. It was decided a few weeks back that it was time to start morphine at home and so this has been the case. The Morphine has helped a lot with the increasing amounts of pain she is in when her bowel flares up.

From a motor skills point of view, she has learnt how to sit upright on the sofa aided and stand up from there too which is fantastic.

Seraphina still continues to amaze us with her love of life and smily disposition despite all she has to cope with.

Special thanks to Claudia from Germany for the Princess Lillifee stuff which really made Seraphina smile and to Rosie Montague-Vaughan for the box of birthday presents you sent for Seraphina’s siblings – that was such a sweet thing to do.

Update 19th June 2012

After a three month stay in hospital Seraphina is home. She loves being back home with her family and her ”coming home present’ was not one but two gorgeous Ragdoll Kittens called Cherub and Cupid… these little fellows raise a lot of smiles (especially when they are being naughty!).

She has now got confirmed chronic intestinal failure and is totally TPN dependent. We have had to learn how to do IV’s and take blood and urine samples weekly, sometimes more often. Seraphina continues to suffer from bleeding in her bowel, multiple infections and pain for which we have potent morphine based medicine. Unfortunately her iron level has dropped quite sharply again and so she has to have quite a long transfusion again next week (Tuesday). We’re praying that she is well enough to go to the Post pals party on the 30th June!!

Thank you for our Post Pals post and to Alex Stiles Welch for your lovely letters/cards and to Karen Winch for the bits for the Kittens.

Update 27th February 2012

Seraphina was admitted to hospital 9 days ago. When we got admitted Seraphina was in a poor state, she wasn’t tolerating feed or dioralyte, she had diahorrea and every nappy contained blood. She was sweating with pain and nobody really knew what was going on. She had bloods done and was out onto IV fluids via her port. After a chat with the consultant they went to book an endoscopy and colonoscopy for the 1st March. Once they realised how much pain she was in they decided to do it on Tuesday afternoon.

She went down to theatre and I got given the familiar pager which would go off when she was in recovery and they were ready for me.

When it went off I went down expecting to be called straight in to see her. I wasn’t though – instead I was called into a private room to talk to the surgeon who had carried out the colonoscopy. That’s when alarm bells went off.

He explained that their findings had been extraordinary. Seraphina’s colon was visually like bubble wrap, so close together were the ulcers and sores and the surface of the colon which had bubbled with gas and inflammation. The surgeon was so concerned about doing a biopsy that he phoned the gastroenterologist to check he still wanted one given the state of her bowel. He did. Unfortunately when he took the biopsy he described it as ‘trying to biopsy cling film’ and her bowel perforated. He said that Seraphina’s bowel was so bad that it would never recover and she would not be able to be fed via tube again… it would be TPN only (which is feeding via a vein).

In the days that followed Seraphina required more and more morphine and other pain medication had to be added in. She bled out of her gastrostomy, her heart rate dropped very low, so low in fact that unknown to me then they had to call the resuscitation team who were sitting in a side room in case they were needed for a few hours.

Saturday was an exceptionally bad day… her bowel spontaneously perforated again and we were told it could happen again at any time. For safety’s sake she was already on multiple antibiotics.

Today has been better – she’s still on morphine but not needing as many boluses and has sat up in her chair for a while.

The plan is a long one. On the 22nd of March she will go back to theatre to see if the weeks on TPN has improved her bowel any. She will have an endoscopic evaluation, something called a wireless camera, which is a little capsule which will travel through her G I tract taking photos every 2 seconds (this is the only way they will be able to see her small bowel as it was too fragile to look at endoscopic), she will have a laperoscopy and CT scan to look at the outside of her bowel. Depending on the results of these tests it is thought she may well be better off without her colon and so she will have a colectomy and a stoma placed.

I can reel all this off quickly now but on Tuesday evening I was in shock… total shock. I was also so angry, having been told that the prognosis/ life expectancy was now poorer than we had thought before. If the cure for Rett was found tomorrow it would still be too late to reverse the damage it had ravaged on my little girls insides. So we are in another 3 weeks until surgery and then they have said around another 7 weeks afterwards… a loooonnnng time.

When she comes out she is going to be spoilt… she has wanted a cat for a while and so by hook or by crook I want to get her one. Bless her, even on the worst days when lying lethargic and worn out from pain, the nurse said to her “are you getting a kitten?’ and her eyes lit up and she smiled that captivating smile that only Rett girls seem to possess. Somehow we will find the money to buy her one. It’s the least we can do after all she’s going through.

Thank you for all the precious people who have supported us through this week. Thank you for all the prayers too… it’s so good to know that there is such a cry to heaven going on for my gorgeous girl.

Update 18th January 2012

Seraphina had a good Christmas and new year despite her tummy being poorly for part of it. We were all very glad to be home together.

Since then her tummy has been causing her more distress resulting in three bowel bleeds last week. The nurses have come out to see her regularly and believe its time we had morphine available at home to help her cope with out breaks of pain. It also seems her port-a-cath has stopped working. We were seen at Sheffield yesterday as a result of her bleeds and not being able to tolerate feeds again. She has been given more steroids and pain relief and we have signed consent for her to have a colonoscopy and endoscopy with biopsies and her port changed. They are also going to arrange for her teeth to be looked at under the same General Anaesthetic. We won’t know for definite until after the surgery but the Gastroenterologist believes that Seraphina’s residual colon is just not working any more and has mentioned that the best thing may be to remove it all together. However, this is a big operation and so we are understandably very anxious about this possibility. We have been told her surgery will be in the next 2-4 weeks and so are just waiting for the call now to go in.

A big thank you to the children’s’ Christmas Elves for making their Christmas extra special. Thank you also to Lydia’s Elf for the lovely fluffy socks and foam bath for me, both were put to good use!

Update 10th December 2011

Seraphina has been in and out of hospital a lot recently. She has been diagnosed with a type of inflammatory bowel disease which means that she has been bleeding in her bowel. She has had a blood transfusion and a little while being fed by TPN. Now she is tolerating half strength feed. She’s also on long term steroids and immunosuppressants to keep the inflammation in her bowel down, which at the moment require weekly blood tests. Despite this she has a lot of tummy pain and diarrhea episodes which leave her drained. She is also very susceptible to infection now which means we have to be very careful with her and if she gets a temperature take her to hospital straight away. She has also developed a hernia over a past bowel operation site and so will need that repaired in the New Year.

On a positive note, a couple of days ago Seraphina took some steps all on her own which we are really thrilled about as she lost the ability to walk at 18 months when she went through Rett syndrome regression phase… what a STAR!! 🙂

Update 9th October 2011

Seraphina’s pain has been well controlled most of today. The plan is bowel rest and iv meds and to try dioralyte again on Monday.

Update 7th October 2011

Seri is now on continuous pump of morphine as iv bolus did nothing. X-rays showed grossly distended bowel and what they think is a perforation. We have got to go for more x-rays.

Update 5th October 2011

Seraphina went to theatre, the consultant said her colon is grossly abnormal; her entire colon is inflamed, raw and bleeding. It looks like we are going to be in hospital for the long run.

Update 3rd October 2011

Seraphina was rushed to hospital; her HB is so low due to internal bleeding that she is in danger of a cardiac arrest. She is being admitted for emergency transfusions and investigations. She is extremely frightened and anxious to the point of being sick when anyone comes near her.

Update 21st June 2011

Seraphina has been home for a month now. We are still having ongoing issues with her gut. She has been diagnosed with chronic intestinal pseudo-obstruction and we now have a rectal tube that we have to use on a regular basis to ‘deflate’ her bowel. The long term plan is to have a third stoma placed in her bowel, but this is a big operation for her and so she needs to be a bit stronger before we do it. She is rather skinny and gets tired quickly at the moment but she is still smiling and that’s the main thing.

I have updated her blog now so apologies for those who were waiting for an update.

Update 11th May 2011

Seri is in theatre now as she has 3 twists in her bowel. Please say a prayer for her.

Update 10th May 2011

Seraphina is very poorly and on the list for emergency bowel surgery tomorrow.

Update 9th April 2011

I just want to say thank you to everyone who has been supporting Seraphina as we go through this bad patch in and out of hospital. The cards and bath ducks have really cheered her up even on the most poorly days.

We are at the Evelina children’s hospital next week in London. We’re just praying they have some good ideas about the next steps in treating Seraphina so that we can have her back to her lively bubbly self soon!

Update 10th January 2011

It has been a bit of an up and down month. Seraphina had her operation at the end of November (30th) and we had high hopes for the outcome, but unfortunately she had a lot of pain from the procedure which is unusual, and when the casts on her legs were changed she only had the new ones on for 48 hours before she was at the stage of needing Morphine for pain. We had to have the casts removed as her feet were swelling up and when they were removed we found that she had grade 3 pressure sores on the front of both ankles which were weeping and bleeding. We had to dress them and change the dressing every day which she found very sore. Then she unfortunately had an allergic reaction to one of the dressings which meant that she had hives all over the front of her ankle too which still haven’t quite gone. The operation was not successful and so unfortunately she is booked for another surgery (which they said should be this month) to cut through her Achilles tendons and also open up the back of each calf and cut through the muscles there. She will then be in plaster for 4-6 weeks. We are praying that this goes well and we don’t get any more pressure sores.

On the positive side, we all managed to spent Christmas together which was wonderful considering last year was spent in ICU. Seraphina even got the hang of using her hands to unwrap her Post Pals presents!!! We thought she would get a bit overwhelmed and so only gave her a couple to begin with, but she started screaming and when we asked her what was wrong she took my hand and pointed it in the direction of her Post Pals presents… so I said ”do you want more?” and she clapped! Clearly she was getting the hang of presents VERY quickly this year!

Thank you to the children’s Elves for making this Christmas extra special, particularly the person who bought Lyida’s Jacqueline Wilson collection, Sam’s RAF Elf (who according to Sam drives very fast planes!) for the Where’s Wally? books and slinky, Becs who made Aimee’s Christmas with all the card making gear and Seraphina’s posties/elves for the littlest pet shop toys, Peppa pig book, bath ducks etc etc, not forgetting the lovely woolly socks from Finland! Also a big thank you to MY elf for the lovely chocolate truffles! Definitely made my Christmas!

All thoughts and prayers would be appreciated for Seraphina’s upcoming surgery and also that she manages to get rid of the bad chest she has had for about 6 weeks now which makes sleeping difficult due to coughing/needing suction.

Update 25th November 2010

Seraphina has had a better month health wise and now we are trying to keep her fit for her surgery up in Sheffield on the 30th November.

We went to the Rett syndrome conference last Saturday with Seraphina. It was good to meet other children with Retts and learn more about Seraphina’s condition. Seraphina was parked in her wheelchair next to a large Christmas tree at one point and discovered a fascination with large shiny baubles which she was trying to kick into her wheelchair with her feet!! Both she and the few people that saw her thought it was very funny!

Her sister, Lydia, had her brain scan yesterday (24th) so we just have to wait for the results now. She has been very much cheered up by the couple of cards she had so thank you very much for those.

Thank you to Meri M from Slovenia for Seraphina’s story book, the people who have sent birthday cards ready for November 27th, and the children from the Army base in Riteln, Germany, for their hand made booklet with Peppa pig picture on.

Update 8th November 2010

Unfortunately we are going through a bit of a tough patch at the moment. Seraphina seems to be getting one bug after another and is getting really run down. She has caught another bug over the weekend and is very chesty and miserable and requiring a lot of suction.

We did make it to Sheffield – she had her chest drain attached and we saw the Orthopaedics consultant – the reason for the pain in her hip for the last few months is that it is partially dislocated! Her muscles and tendons in her legs are now extremely tight which is also causing her pain and so she is booked in for surgery and serial casting on her legs for 8 weeks. We should get the appointment through in a couple of days but he said it will be for sometime this month, so it looks like she will be in plaster for her birthday.

The other news we have is Lydia (who already has scoliosis and Syringomyelia) which causes a lot of pain, has to have a brain scan on the 24th November as her legs are also causing more problems and we finally got to see a neurologist who believes she has Cerebral Palsy!! This was quite a shock and Lydia is a bit tearful about it at the moment.

There are a few other heath issues going on with Seraphina too and to be honest we are struggling a bit so your thoughts and prayers would be appreciated.

Update 3rd October 2010

This month has ended better than it started. The first part of the month Seraphina had to be taken to hospital as she had seizures that wouldn’t stop and so had to be given a drug to stop them.

Unfortunately, she had a urine infection which triggered them off and while she was fitting she aspirated and so needed antibiotics to protect her from a chest infection. Her oxygen requirement doubled at this time which was quite scary for both of us. She also developed a different kind of seizure to add to her repertoire and had some sort of collapse and we are still waiting to see what the Consultant thinks may have caused it. She had only just got over the seizure episode when she needed to be checked over again, as she came down with a horrible tummy/fluey bug which meant that she couldn’t be tube fed her normal milk, but had to have dioralyte for a while and was really quite poorly with it. Thankfully she has all but got over it now but it has really knocked her health-wise so she is a little weak and wobbly at the moment. We are hoping that next month is a bit better health-wise for her.

Thoughts and prayers are appreciated for 21st October when she goes to see the neurologist and on the 25th when we are in a different children’s hospital for her to have a permanent chest drain valve fitted which hopefully should help with gas build up. Seraphina gets very very scared and upset about going to hospital now so all prayers are appreciated.

I am just in awe of Post Pals. The difference it has made to Seraphina (and me) is immeasurable. It is so lovely to see her little face light up when she sees an envelope, she is really getting the idea of this now and can’t wait for me to open the post for her. It was also lovely for Samuel to get a present as it is all too easy for siblings to feel a little left out at times when caring for a child with such complex needs, so thank you for making his day.

Thanks to Lilli, Isabella and Elouise for the lovely postcards from Hong Kong and also to Jane Fawcett for the postcard, what fantastic pictures of your cats! Thanks to Percy for telling us about his wonderful adventures and also to Sarah G for her wonderful letters that all the children look forward to me reading out! I’m afraid Seraphina did laugh quite a lot at you getting all wet and muddy though, especially when we kept repeating the word ‘splosh’ to her, she thought it was quite hilarious! A big thank you to Samantha for Samuel’s Helicopter craft kit, he loved it! And also a thank you to W. Krul for sending Seraphina the gorgeous yellow butterfly toy which she has become quite attached to!

Story written 2010

Eleanor was born with several life threatening conditions – Muscular Dystrophy, Cardiomyopathy, Severe Dystonia, Peripheral Neuropathy, Arthrogryposis and Multicystic Kidney Disease.

Eleanor, (I Elle as her friends call her), has constant therapy and trips to the hospital several times a month but still tries to do everything she possibly can.

Eleanor uses an electric wheelchair as she can only walk a few steps and is due to have foot surgery soon. Due to her deterioration, Eleanor will be having brain surgery in the next few weeks in the hope of easing some of her symptoms and delaying the de-generation of her condition.

Although she gets breathless and very tired, Eleanor tries to join in with her friends and has extra feeds through a gastrostomy tube to help her get more energy (she does love eating normally though).

Eleanor struggles with most daily activities as she has muscle weakness and erratic body movements but she does everything with a smile.

Eleanor now has a CaringBridge website at: https://www.caringbridge.org/visit/eleanorgabriel

Update 11th November 2025

Eleanor is still spending most days in bed due to the pain in her hips and back. She is managing a couple of hours out in her wheelchair here and there every now and then but suffers a lot afterwards.

We have had a small amount of progress with the doctors regarding Eleanor’s hips and back. We spoke to Eleanor’s neurologist, who has decided that she needs to have an MRI before any surgery on her hips is even considered. Unfortunately, this will be quite a military operation to organise, as Eleanor’s deep brain stimulation will have to be switched off in order for her to go in the MRI machine. She will also need a general anaesthetic due to the pain that lying flat will cause, and because she will not be able to control her movements. This means a team of neurologists, respiratory consultants, cardiologists and orthopaedic surgeons all need to be available during the scan, so we are currently waiting for them to get organised and give us an appointment at King’s Hospital.

In the meantime, Eleanor has seen the consultant on the pain management team, who has increased her painkillers and spoken to us about the possibility, after the MRI, of Eleanor having nerve-blocking spinal injections or spinal cord stimulation.

Eleanor, as usual, is being really brave and still has her big smile, even though she told us she just wishes they could remove her legs to make it all go away.

Eleanor is distracting herself from the pain by watching Wicked over and over again, listening to Louis Tomlinson, Taylor Swift and One Direction, and doing her art. Eleanor started an Amazon wish list and is enjoying looking through Amazon for all the things that make her smile.

Update 8th November 2024

Elle loves all things Disney but her favourite is Cinderella. Music is her life line, she likes Heartstopper, Louis Tomlinson & Taylor Swift. She also has a new interest of watching Criminal Minds, hospital dramas and other crime type programs and just started watching Buffy.  Art is her other pain distraction and she no longer has access to a bath but uses massage oils/creams to help ease the pain.  She’s definitely very girlie, loves anything with a bit of bling!

Update 31st October 2023

Elle has had a bad year with her heart deterioring and severe pain. She had to leave college due to the pain. Elle still loves to create art whenever she can and her love for One Direction, especially Louis is as strong as ever! Elle has always loved Disney and Cinderella remains her favourite. It’s hard for Elle to go out due to the pain.

Update 21st January 2016

We have decided that Elle should move on from Post Pals as she is doing so well.

Update 8th August 2015

Eleanor always finds the summer holiday difficult, as she wants to do the things she see’s other children enjoying, but her pain is preventing her from doing much. She is listening to lots of music instead to make her smile.

Eleanor would like to say a big thank you to Kym who sent her a box of Sunshine which had a lot of gorgeous personalised items in that clearly were made with a lot of love and care.

Daniel would like to say thank you to Em from Isle of Man. He said you make him so happy when he gets your letters and parcels.

Both Eleanor and Daniel say thank you to Post Pals for their lovely goody bags.

Update 23rd July 2015

Eleanor is doing OK at the moment. She is getting tired quickly but luckily being a teenager means she can just chill out on her iPad and listen to music. We are awaiting results from her sleep study to see if her oxygen has reduced any more during the night, but her heart is doing well on her current medication.

Thank you so much for our amazing paper cuts, they are taking pride of place in Daniel’s room and our living room. We will take a picture of them!

Also a massive, huge thank you to Connor for Daniel’s birthday card. It makes his day when he can see it’s from you Connor. You are an amazing and caring young man.

Update 31st May 2015

Eleanor is still having lots of tests and investigations at the moment. Her pain levels seem to have improved with new medication, so hopefully she will be comfortable for the forseeable future.

This month is going to be a busy one with lots of travelling and hospital visits.

Update 6th May 2015

We would like to say a huge thank you to Em from Isle of Man who regularly writes to both Elle and Dan and makes them smile so much.

Elle’s health is yo-yoing at the moment. She is generally doing ok but is finding things harder and more tiring because her speech and concentration is affected. She cannot go horse riding anymore so is now more into her cats and dog. She loves watching Glee and Pretty Little Liars on Netflix and has got in to watching teen films with her sister Georgina.

Update 21st March 2015

Eleanor is going into hospital at Kings on Monday for more surgery, this time on her chest as her dbs box is not working. We are hoping to be transferred from Kings to Demelza house children’s hospice on Wednesday for recovery and home Sunday.

Elle is still in love with One direction and is very music orientated now that she is no longer mobile at all.

Dan is now becoming very grown up (or thinks he is!) and he is still in love with Pokemon/Digimon and things like adventure time/regular show from Cartoon Network, but is now also very interested in reading and is enjoying things like physics at school.

Update 2nd August 2014

Elle has had yet more tests over the last couple of months and her oxygen seems to be dipping at night, so more investigations into that are underway. We also saw Elle’s orthopedic surgeon as Elle has been in lots of pain and unable to even transfer out of her chair. Unfortunately he has discovered that both hips are out of their socket and one hip has worn considerably. This means we are now due to go on another London hospital trip in the next week or two for Elle to have more tests under anaesthetic to see what kind of operation they will need to perform to help her. We were also contacted by Elle’s geneticist a few days ago who said they want to test for another rare gene. So all in all, a busy few weeks in our house.

Elle is getting through the pain by doing her usual thing of listening to music while bossing everyone about!

Georgina (Elle’s sister) and her friend Hannah have organised a charity event for Post Pals which is on the 9th August and even printed flyers, bless them. Hopefully they will raise a lot.

Update 4th April 2014

We have a few London hospital trips coming up for Elle to look into her further movement/mobility deterioration over the last year, but she is otherwise doing well.

Elle is very much enjoying her music, as now that her mobility is greatly reduced and she is wheelchair bound, she is spending her time listening to all the popular chart music. She is now also into watching Glee as loves musicals and wants to visit a stage show sometime in the future.

Update 2nd December 2013

Eleanor is coping very well with her loss of mobility, we are having to reduce a lot of things she used to do and get her to rest more but she is as smiley as always.

Eleanor had a lovely package sent to her from 1st Clifton Brownies. The parcel contained 24 numbered envelopes to be opened each day in December. Elle has opened two so far containing a lovely homemade hama bead star and a flag with her initials on. What a fabulous thing for a Brownie group to do. Eleanor will be enjoying her handmade advent calendar and we will be taking pictures to make into a collage for the Post Pals website. Thank you so much 1st Clifton Brownies for a whole advent of smiles!

Also a big huge thank you to Connor for Daniel’s parcel, he loved it, you got it exactly right! And thank you for Zara and Georgina’s yummy chocs!

Update 28th September 2013

It has been a difficult few months for our family as Eleanor is deteriorating, luckily at a slow rate, but still enough to be upsetting. Elle now cannot walk at all and a recent scan showed damage to her left hip.

After several assessments in London, Eleanor’s consultant has come to the conclusion that her tiredness and general weakness is due to the degenerative nature of her condition and was unfortunately expected when she reached pre-teens. We have now been advised to be prepared for the future and currently looking into more support and equipment for the home.

Alongside this, Eleanor’s mum has been poorly and is about to have several surgeries. Georgina, Eleanor’s older sister, is being a completely fabulous young carer and helping to care for her autistic brother while mum and Eleanor have their various hospital trips.

Thank you to Connor and Karen. Daniel loved receiving post from ‘his mate Connor!’ And thank you Laura J as Eleanor was so impressed with her 1D Chocolate, she was giggling for ages.

The support that Post Pals gives to the whole family, not just the named child, warms my heart. Our family will always be grateful and appreciate every single piece of post sent, no matter how small.

Update 18th September 2013

Had bit of bad news today. Elle’s orthopaedic surgeon told us that her hips are damaged, the bone has grown deformed, and so she has now got to reduce her crawling and will be wheelchair bound pretty soon and need an intensive operation. We’re so sad, she loves her independence.

Update 3rd April 2013

Georgina (Eleanor’s older sister) would like to say thank you so much to everyone for all the post she has received since Eleanor has been a Pal, but feels that now she is older she would like to stop receiving post so that other children have a chance at smiling as much as she has from it!

Update 1st March 2013

Eleanor is settling into her specialist school very well and it has done her confidence the world of good. She seems to be a little less tired as she is not trying to keep up with all the able children like she was before.

Eleanor’s condition continues to deteriorate, although thank goodness it is very slowly. She is no longer walking at all and becoming increasingly dependent on equipment but is trying as always to be as independent as she possibly can.

Eleanor is absolutely obsessed with One Direction now, especially Harry Styles, and is more into listening to music and playing on a laptop now. She’s becoming more teenage-like daily! She also loves to watch Pop girl, Sabrina the teenage witch, Mortified and Disney programmes, Victorius and i Carly.

Post Pals has picked us up and made us smile when we felt that life had got too much, please never underestimate the joy you can bring by supporting Post Pals.

Update 9th October 2012

Eleanor started to deteriorate a few months ago and now has unfortunately lost her ability to walk and stand unaided. She is taking things slower as she is becoming tired very quickly so now spends most of her time listening to music or on her computer. She was due in hospital for a few days of extensive tests to find out why she is deteriorating at such a rate but unfortunately the appointment has had to be cancelled and is re-scheduled for the end of November.

Eleanor now attends a specialist school as she was unable to keep up in mainstream, but she is very happy and has made lots of new friends.

Elle’s main interest at the moment is X Factor, she is a huge fan and loves everything about it. She is getting more and more into music now and dreams of meeting Cher Lloyd but also loves Katy Perry, Little Mix, One Direction, and Jessie J. She is also a big fan of Disney channel and Pop Girl shows like Good luck Charlie. She is even trying to make her own videos using her phone camera!

Update 12th March 2012

Eleanor is having some tests to find out why her condition seems to be deteriorating. She is very lethargic and struggling a lot but is still being a cheeky little madam!

Thank you for all our post and a special thank you to Em from Isle of Man for sending all 3 children post regularly – lots of smiles created by one person.

Update 15th October 2011

Eleanor has had a really difficult and busy few months; she had her operations on both feet and spent the whole of the summer holidays in plaster casts… which she charged people to sign for Post Pals!

In the last few weeks Eleanor has had constant trips to hospital in London and is struggling a bit with tiredness and breathlessness, but is still carrying on doing all the things she loves with a smile!

Due to Mum being quite poorly and in out of hospital too, it has been quite hectic for the family, so apologies for late replies.

Thank you so much to Denise Cannadine for the Worst Witch books. Eleanor is still X Factor obsessed, but is also now enjoying her sister reading her Harry Potter and the Worst Witch. She is really getting into music too and is a huge Katy Perry fan!

Update 5th June 2011

Eleanor has had some deterioration over the last few weeks and has been struggling quite a bit, so we are back and forth to Evelina children’s hospital for heart tests, neurology etc.

Elle is going to have more surgery on 26th July. Her feet have become severely deformed and we cannot get shoes to fit her anymore so they are operating on her feet to make her more comfortable. We are unsure if she will be able to walk after the operation, but she has proved us wrong before so fingers crossed!

Elle also has a new obsession! Talent shows… Xfactor, Britain’s Got Talent etc, so if anyone wants to write to her and talk about these types of shows she would love it.

Daniel is doing well at his new specialist school and has a real thing for Dr Seuss and Harry Potter and Lego at the moment. Georgina is being a real star and coping with all the stress really well. We had a few tears the other day when we were staying at Demelza House because I think she has just begun to realise what a hospice is, but she is getting support from the Demelza House team. She is really into story writing and reading and has written her own novel!

We will be coming to the Post Pals party on the 25th June and can’t wait to meet you all!

Update 7th April 2011

I would like to say a huge thank you to all at Post Pals for the immense support they have shown us during these hard couple of months.

Update 28th January 2011

Daniel received a card and a pen with an alien/monster topper today. He is so pleased with it, he has been carrying it around all day and telling everyone it’s called a monster boggle pen! Just goes to show how much just one thought from someone showing they care makes a child smile! The card also had pictures of cows on it and a lovely description inside of the ladies (Lynn) children and their dog. It was such a lovely thing to brighten Daniels day. Thank you Lynn, Holly and Jack xxx

Update 9th January 2011

Eleanor is doing well. She unfortunately missed her last review at hospital but will catch up soon I’m sure.

Update 8th December 2010

Eleanor had a bit of a blip after her operation and kept collapsing. After being put on some new medication she seems to have perked up and we are going to see her doctor on 14th December to see how things are.

We have had a few low moments this month but we’re getting into the Christmas spirit now and would like to thank everyone who has sent post! You can be having the worst day imaginable, then get home to some post from Post Pals and realize you can still smile as people do care!

Update 19th October 2010

Just to let you know Eleanor has had her brain surgery and is back home again. We thought she would be in hospital for quite a while but it was decided that she would be better off recovering at home away from bugs etc. We just got home today and she is doing well. Her Post Pals pillow case has been a great comfort to her.

Update 11th October 2010 (10pm)

Elle has had her surgery and is doing well. She is in and out of consciousness but being very brave.

Update 11th October 2010 (2pm)

Eleanor G went down to surgery at 8.30am. We are now twiddling our thumbs waiting and hoping she will make it through.

Thank you so much to everyone who has sent her post. YOU GUYS ARE ALL AMAZING!

Update 7th October 2010

Elle is going into hospital on the 11th October to have brain surgery. She will be in Kings College hospital for 1-2 nights and then will be transferred to Evelina children’s hospital where she will be recuperating for a couple of weeks. She will have quite a bit of recovery to do at home as well before she can go back to school or join in with her friends but we are hoping the operation will slow down the degeneration of her condition and give her some better quality of life.

Elle is very nervous but had a great time on Sunday when several people got together for a sponsored head shave to support her when she has her hair shaved off. Eleanor loves her amazing smiles that come from miles!

Daniel and Georgina have received some beautiful home-made cards, thank you so much to everyone for thinking of the siblings too, they are going through such a tough time at the moment and it is lovely that they are thought about as well. Elle would like to say a huge thank you to everyone who has been sending her letters, she loves reading about your day and seeing pictures of pets etc, it really has made this time in the run-up to her operation much happier. A huge thank you for the rainbow bandanas!!! As Elle will be having her hair shaved on Monday this will be her prized possession for a few weeks!
Also, a while ago Eleanor was sent a cuddly horse with a voucher to name a star; it was such a lovely thoughtful gift that really made her smile!

I would encourage anyone who wants to fundraise for a charity to pick Post Pals as they do so much for many many families!!!

Update 30th August 2010

We are seeing Eleanor’s brain surgeon at Evelina on Friday and Eleanor will be shown the implants that will be going into her brain and assessments will be made ready for surgery.

Eleanor is taking her Build-A-Bear everywhere with her, thank you so much Dan and Jen, she is even looking forward to taking it to hospital. She has named her bear Cinderella!

Eleanor is going to put a map up in her room so she can mark off where she gets post from, she is very excited that she has received post from different places and can’t wait to show her friends.

Update 22nd August 2010

Eleanor will be having her brain surgery on the 12th October. She will be at Kings College Hospital on the 11th for admission, have the surgery on the 12th, and then will be transferred from Kings College to Evelina Children’s Hospital on the 13th for a 2 week stay and then further recovery at home. She will be having her head shaved on the 11th too, which is quite scary for her.

Thank you – you guys are amazing.

Please note Lewis is now suffering severe anxiety about most things including things he would have enjoyed before (like halloween post or even pictures of things outside of his interests). More details in his October 2022 update. Lewis is unable to eat or drink. 

Story Update October 2019

Since Lewis’ diagnosis in July 2014, I have been trying very hard to make as many memories as I can with my brave boy. This has been very difficult at times, as Lewis is at risk of the simple illnesses like a cold turning into something far more serious. This means we only tend to visit busy places in the summer months when less nasty winter bugs are around. We also tend to avoid indoor places. Also, with Lewis having so much equipment, and growing so quickly now (he is half way through being 15!) he takes up a lot of space and I can’t look after him alone so with his 24 hour nurses and carers along for the ride, we avoid busy places too! In December 2017 Lewis caught a really nasty winter bug and ended up with more lung damage. This meant that I could not leave the house with Lewis as he had to be attached to his high pressure, humidified ventilator all the time. As the weather improved, I was able to take Lewis out in the garden for a little time each day, but it meant transferring all his equipment outside on a trolley, with an extension lead running into the house to keep him plugged in to his equipment at all times.
Thankfully, in August 2018 we were introduced to a magic piece of equipment which meant that Lewis could tolerate time on his un-humidified ventilator for short periods of time. We started by walking down the road and back, and gradually increased our time out to encompass walking our dog Phoebe in the local woods.
We soon realised we had a lot more freedom available to us, but Lewis had outgrown our car so we had to buy a great big wheelchair adapted van! We now get to take Lewis all over the place, including the Post Pals Party this summer (2019).
Lewis continues to beat the numbers with Neuronal Ceroid Lipofuscinosis (Batten Disease CLN14) as we were always told he would live to around 10-12 years of age. Every day is borrowed time and we are making the absolute most of it! Lewis is now too large and heavy to lift safely so he has to be hoisted which means having a cuddle is very difficult but sometimes I get the nurse or carer to hoist Lewis on to my lap, although he doesn’t fit any more!
Lewis’ scoliosis continues to worsen and our battle is to keep his bottom ribs from reaching his hip bones. We do this with positioning and cushions but as Lewis gets older and his bones begin to fuse this will be more difficult and he will have a new set of problems to face – his internal organs are running out of space as they grow, and his lungs are already damaged from infections over the years.
I hope and pray every day that Lewis will keep fighting and keep proving the doctors wrong with his strength and resilience. He is truly my hero.

Story updated in July 2014

Lewis was born on the 28th February 2004 and everything went really well. Lewis grew and developed normally, although he started sitting up a little late at around 7 months and started walking a little late at around 17 months. At around 6 months Lewis started having Reflex Anoxic Seizures – holding his breath until he turned blue and passed out. He grew out of these by the age of 4. By the time he was 2 he was walking absolutely fine, just like your average 2 year old.

Not long after his 2nd birthday he started to limp on his right leg. This was diagnosed as irritable hip. After around 8 weeks he was able to walk again normally. Mid April 2006 he stopped walking completely and would only crawl. In May 2006 we saw a specialist and Lewis started on physiotherapy and a whole bunch of tests. In July 2006 Lewis had his first epileptic seizure. In August 2006 he had an MRI. In September he had a second epileptic seizure. Whilst we were in hospital for this second time, Lewis had ECG and EEG and several blood tests. His EEG came back abnormal. In October Lewis started to have regular epileptic seizures and was put on a treatment program.

From around September 2006 Lewis’ condition worsened considerably and he became unable to sit up unaided. By November 2006 he could not sit or even support his own head and physically all he can now do is lie on the floor. He now cannot use his hands at all and has to have a special chair to support his entire body and to try and keep his spine and hips in good position to prevent scoliosis and hip displacement. Unfortunately we were a little late finding out that this was so very important so Lewis now has quite severe scoliosis, rib and spine rotation, and hip displaysia. In November 2006 Lewis went into hospital for a lumbar puncture and tissue and muscle biopsies as the doctors have still not been able to diagnose the condition Lewis has that has caused his physical condition to deteriorate. He has since then had many more tests including a very detailed 3-teslar MRI which came back with the same results as usual. Normal.

In 2011, Lewis remained undiagnosed. An MRI scan did show some deterioration in his brain (cerrebular atrophy) which the doctors believed was post-infectious but they didn’t know what infection caused it, or when! They said it looked like what someone would have if they had had chicken pox! More frustration!

Lewis re-started a course of therapeutic antibiotics again in May 2010 as he was on these for 6 months in 2009 and we did see improvements in his head control, he tried to speak, and he tried to reach out for things effectively. Unfortunately, in December 2009, we had to stop the treatment as Lewis was fitting every 10-12 minutes and we couldn’t work out why. He spent a lot of time in hospital leading up to Christmas and finally came home on Christmas Eve but didn’t really recover fully for several weeks. We finally discovered that changing his antibiotic was the problem. One of the antibiotics Lewis was taking had raised the levels of anti-epileptic medication in his liver, so when we took him off that antibiotic to start him on another, his levels dropped dramatically!

In 2013 Lewis was admitted to hospital with a severe stomach bug. This resulted in intubation and transfer to ICU. It was discovered his bowel and stomach and abdomen had grown together due to an error in the replacement of his stomach tube in 2010. The tummy bug he had caught allowed the contents of his bowel to be forced through the ‘tunnel’ into his stomach. This required surgery but in Lewis’ weakened state and with a mix up over medications, Lewis ended up remaining in ICU/HDU for six months with collapsed lungs, several episodes of status epilepticus and various infections. His lungs could not cope with all this and in October 2013, Lewis had a tracheostomy tube fitted to allow him to breathe. He also requires a ventilator to assist his breathing. He has 100 degree plus scoliosis and dislocated hips (exacerbated by restricted positioning and not being able to have regular stretches or physio whilst in hospital).

Lewis also suffered a shoulder fracture whilst in ICU due to particularly violent seizures. This has never healed and the bone has dissolved so Lewis is also in constant pain from this.

Finally, on 8 July 2014, Lewis was diagnosed after over 7 years of being undiagnosed. Lewis has Neuronal Ceroid Lypofuscinosis on the KTC07 gene. NCL is also known as Batten Disease. There is no treatment or cure.

Our boy is SO brave. Every single day he deals with unimaginable pain and discomfort and yet still he smiles. Lewis is an incredibly happy chap, despite all his problems, and he loves to spend time with the other children and interact with them as much as possible.

Update 3rd November 2925

Lewis continues to have episodes of increased seizures, partial digestive failure, and erratic breathing difficulties. So far, regardless of Lewis’s physical condition, we continue to go out for our daily walks in the local woods, feeding the ducks, enjoying watching the squirrels, and listening to the birds. We also try to visit the local wildlife park regularly, as we have an annual pass; however, this is becoming more difficult with the shorter days.

Lewis continues to love hearing from his Post Pals friends through their cards and letters. Our home is filled with love and joy thanks to your kindness.

Update 11th November 2024

Lewis is now 20 years old in years but is still a young child in his mind and in his heart. Lewis continues to adore giraffes and cbeebies, especially Sarah & Duck and The Clangers. He loves the baby soup dragon and the iron chicken the best.
Lewis medical condition continues to deteriorate. His chest continues to be fragile and so like a lot of clinically extremely vulnerable people, we are still shielding him to protect him from potentially deadly ‘common’ viruses.
In recent months Lewis has struggled with travel and so we are now restricted to very short trips in the van and tend to mostly walk to the local woods and stay in the local area. Lewis loves to watch the squirrels and we enjoy feeding the ducks.
Very recently Lewis has a chest infection which needed antibiotics. This upset his fragile stomach which caused him to have increases seizures resulting in strong ‘rescue’ medication to stop them. Thankfully, so far, they have calmed down so we hope Lewis can stay well leading up to and during the Christmas period. We are looking forward to when people start to decorate so we can go out and count ‘Christmas houses’.
Lewis is receiving palliative care and so we are restricted in what treatments he can have when he is poorly. This also means no ambulances and no hospital.  We are doing all we can to keep Lewis safe and hope we can enjoy much more time with him.
We love to receive letters and postcards and especially drawings (of giraffes mostly!) which are put on display in Lewis bedroom.  Post Pals truly is a lifeline to us as it can be very lonely keeping so isolated all the time.
Thank you to everyone for continuing to love and support Lewis through his journey with Batten Disease.
Lewis loves giraffes!  He also likes window stickers and things which can be hung as he can watch these from his bed.  He loves books and having stories read, pre-school books, especially those that rhyme – he enjoys big eyes, funny faces & bright colours, Tom & Jerry, Sunny Bunnies.  His favourite colours are bright colours, especially purple & orange

Update 17th July 2024

Lewis continues to have periods of being extremely unwell.  These can be due to seizure clusters or partial gut failure. Both are immensely distressing for Lewis and for myself, Mum.  We manage these periods at home and thankfully, in between periods, we have settled times where we can relax a little and enjoy being together and making memories. We now can not travel far with Lewis  –  maximum 20 minutes away from home – as Lewis can not cope with unfamiliar places or people, and he can not manage extended periods of time in his wheelchair.  We can manage a 3-hour round trip to the local wildlife park, or the woods, or the lakeside area to feed the swans and ducks.  We have to be close to home as his tolerance and condition can change within moments. Sometimes we just manage to walk up and down outside just to ensure Lewis is getting his fresh air for the day.
On 28th June we were so lucky to be visited by Lewis long time Post Pal Anna from Canterbury. What a treat! It was lovely to receive the actual Post Pal in place of post (but not in the post of course!) and we had to let her go home at the end of her visit ! It really was such a great experience to be able to spend time with Anna after all these years and Lewis was very comfortable around her which was lovely.
As I continue to try and make happy memories with Lewis it always helps us to keep going knowing we are loved and cared for as Lewis continues to receive such beautiful cards, letters, postcards and gifts so thank you all for helping us to make every day special.
Lewis now loves Mr Bean on TV and he loves having stories read to him, especially with silly voices and seeing faces close up especially silly faces and funny noises. He still loves giraffes

Update 28th February 2024

Update October 2022

Lewis’ anxiety has become a lot worse. He has anxiety about most things now but still loves giraffes (especially drawings and postcards for his giraffe window) Tom & Jerry, Clangers especially iron chicken, baby soup dragon and baby skymoo, Elmo and Gonger from Furchester Hotel, and he loves Big & Small, also Waybuloo, especially Yojojo

Anything dark or even remotely scary (anything to do with monsters or anger) really upsets and scares him so we have to monitor what he watches closely and do a lot of fast forwarding! He still loves having stories read to him.

He loves to hear about pets and animals, especially if he can see drawings or pictures to go with them

Update 26th July 2022

Unfortunately, we were not able to attend the Post Pals Glamping event at Chessington as Lewis’ health was just too unstable.  We have had a terrible few months, logistically speaking.  The local children’s hospice which we only very recently began to rely on, has now closed indefinitely.  We did not access the hospice previously as they were unable to provide care for someone as clinically complex as Lewis, and as Lewis experiences anxiety away from home, it would not have been kind to take him, even with his own home carers and nurses.  In January and February 2021 when Lewis was in hospital and everything changed significantly again for the worse, we met with the lovely hospice palliative consultant and agreed that Lewis would access their at home palliative and end of life care.  This was a very difficult time, involving discussions that no parent ever wants to think about for their child. Even though Lewis is now 18, he still is (and will always be) my baby boy, and mentally and cognitively, he is a very young child.  So, we were very grateful for the hospice support at home, in person and by telephone when needed.  Sadly, the hospice had to close indefinitely in May this year which meant all clinical services were immediately withdrawn.  This resulted in a mass of meetings with different agencies, to ascertain who would take care of Lewis’ palliative and end of life needs.  Within Doncaster Lewis is considered the closest to needing this and so it was all a big panic for everybody, especially Lewis’ Dad and I as we had all plans in place for the time when Lewis decides to leave us, and this was all ripped away from us and we were faced with the unknown.  We have promised Lewis he will not go back into hospital for any reason, and this was being taken away from us because if we did not have the hospice support at home at that time, then it would mean Lewis would have to have ambulance and hospital involvement.  It was terrifying and the guilt I felt as a parent was unbearable. I had made Lewis a promise and now I was having to think about breaking that promise.  Thankfully, the agencies involved pulled together and worked really hard to sort this all out quickly and Lewis is now covered by adult palliative services.  We have had lots of meetings with representatives from adult services and they have been so kind and helpful.  Lewis will now receive regular visits from our long-term GP and will also receive less regular visits from the local hospital adult palliative consultant.  We hope that in practice, when that time comes, Lewis will be able to remain at home and we will be supported as parents through the most difficult time of our lives.

Lewis, health-wise, has (everything crossed) remained quite stable in recent months and so we have been able to visit the local wildlife park often as well as going for our daily walks in the woods.  We had a lovely day at the seaside and finally got to use Lewis’ all-terrain wheels to go on the sand which was magical!  We had lunch in a fish and chip restaurant (very brave – our first time not wearing a mask indoors and being around people) which went ok.

Lewis has continued to receive such wonderful cards, letters, drawings and gifts from Post Pals friends – we are amazed by the talents of so many of you and we are in the process of creating a collage of giraffe drawings Lewis has received – even the ones on the envelopes which we always keep.  We always try to re-use stickers and gift wrap as well and we do love to reply to cards and letters if a return address is included.

We do not have any plans for longer distance trips this summer but we do hope to attend the batten disease family conference in September if all goes well.

Our two new kittens, Portocaliu and Murasaki are growing fast and at only 7 months old are much bigger than our other 4 cats already.  In fact, they are almost as big as Phoebe, our 7 year old dog.   We take Murasaki out for walks with us when we take Lewis into the woods – Mura has his own little cat buggy and comes out with his harness and lead on for strolls on and off!  Porto is too scared to go out in the chair though.

We are trying to be more relaxed about Covid during the summer months when we spend so much time out of doors, but indoors we still have to be ultra careful as neither Lewis nor I have had Covid, and the infection rates are so high.

Thank you to everybody at Post Pals for continuing to support Lewis and I. It truly means so much to receive postcards and letters and cards from our lovely Post Pal friends (old and new) and the gifts are always a bonus but never expected.  Just knowing someone is thinking of us enough to put pen to paper really does lift our spirits.

 Update 24th March 2022

Lewis had the most incredible amount of cards for his 18th Birthday on 28th February, we even received a couple just this week! Lewis received over 100 birthday cards from Post Pals all over the world. We were so excited to open them all. There were lots with his name on, lots with 18 on, lots with giraffes on and some with all three! Some incredibly talented people had made Lewis wonderful cards and some people had designed personalised cards with photos on. Every single card was amazing and so very much appreciated as we truly never dreamed we would be celebrating with Lewis for his 18th birthday. Lewis received some wonderful gifts too. Unfortunately, Lewis was ill on his birthday so he had to miss his party, but we were very lucky to see some visitors from as far away as Devon and Edinburgh (both lovely friends made through Post Pals). Lewis also received some enormous boxes filled with magical balloons which are still in his room almost a month later. We felt totally loved and supported on Lewis birthday by the wonderful people who got in touch with us via Post Pals. Truly, over the years since Lewis was 3 years old and we received 65 birthday cards for him from Post Pals friends on what we were afraid would be his last birthday, we have received so much kindness and support and we hope that Lewis will carry on having this for a long time to come.  We are so looking forward to Lewis’ first time in a tent, glamping with Post Pals in May this year.

 

Update 21st June 2021

It has been difficult to update on Lewis as everything is so precarious. He is generally stable, but very much different from before he went into hospital 6 months ago. He had short periods where he is very unwell and the worry is that each episode will be the one that takes him away. The episodes are getting more frequent but we continue to make the most of every day and keep hope. We love to receive the cards and letters from Post Pals. I only wish I had more time to send thank yous. It is so hard most of the time to do things out of routine as each moment is an emotional strain and any deviation from basic routine can cause extreme anxiety for Lewis and myself. That sounds very miserable but it isn’t – I am doing all I can to bring some joy to every day as we do not have the luxury of a future.

Update 26th May 2021

Since we came out of hospital mid February a lot has changed here, but we have slowly started getting used to the new way of doing things.  The main change is of course that we now have very limited treatment options for when Lewis gets an infection or becomes ill.  A few weeks ago, we had to start Lewis on antibiotic nebulisers for 28 days because of an incident where water was mistakenly introduced into his lungs via his tracheostomy tube by a poorly trained nurse.  Lewis is now on strong oral antibiotics as he did go on to get a nasty infection in his lungs which if not treated properly can lead to pneumonia or sepsis.  It is very frustrating to know that Lewis could suffer with something caused by someone’s incompetence and because of the limitation of treatments available, may not survive.  I understand and accept that Lewis has a terminal disease, and is expected to die from the progression of this disease, but to lose him because someone was stupid is really difficult to think about.  The already very stretched package of care is now even more precarious as I will no longer allow unfamiliar staff to come into our home, Lewis is the most important part of all this and his comfort and safety is absolutely paramount.  Hence, I am incredibly tired, but at least I know my boy is as safe as he can be with me and his very small team of exceptional carers and nurses.  Lewis’ hayfever has been particularly bad in recent weeks and so we can not go to the local woods at the moment which is such a shame.  We also have not yet visited the wildlife park as they have had a massive refurbishment and rebuild with a whole new entrance and car park and to be honest I’m nervous and anxious about parking.  Our other favourite place to visit, The Deep at Hull, is now open so we hope to visit there very soon, once Lewis has cleared up this horrid infection.  We also plan a trip to Cleethorpes (the local-ish beach) once it stops raining! Lewis and I have received some lovely post from our lovely post pals friends, which really has helped our days to be much brighter.

Update 4th March 2021

Since December, Lewis has spent a lot of time in hospital which has been quite a shock as we have spent the last 7 years keeping him out of hospital.  It has been an ongoing battle for treatment as the professionals want to put any illness down to ‘deterioration of neurological condition, ie. batten disease’ and this can make them blind to treatable conditions, so it has been a very stressful few months.  Christmas did not happen here, but we did manage to open Lewis’ wonderful cards and gifts from amazing Post Pals so if you did send Lewis something I will get around to thank yous at some point!  The same for his birthday which was on Sunday (28th February) – Lewis got such thoughtful and incredible cards and gifts and I will get around to doing proper thank yous soon, all being well.  So in January and February Lewis spent an extended period of time in critical care and we managed to get him home with a treatment plan going forward.  There were a lot of very upsetting meetings about end of life plans which are so difficult to even allow into the light of day when Lewis is smiling and happy and laughing.  However, reality wins and Lewis is no longer fit for any form of invasive treatment so we have today agreed to a DNAR and limitation of treatment in order to keep Lewis at home.  We will not be taking him back into hospital.  Lewis is still happy and smiley, but he now has new and more frequent seizures and is on a very restricted diet which means he is gradually losing weight – his digestive system is no longer working properly.  There is nothing that can be done about this, just a strict management plan and hope that Lewis can be strong for a while to come.  Future illness will be managed at home, and if treatment is ineffective or not possible then we will make sure Lewis is made as comfortable as possible. Whatever Lewis decides, we will be with him and supporting him through it all.  Lewis is my absolute hero and I do believe an inspiration to many.

Update 23rd August 2020

As Lewis is classed as clinically extremely vulnerable, we have been shielding as a family since mid March.  This has meant Lewis has been unable to see his Dad or grandparents or anybody outside of Mummy, big brother Samuel and the nurses and carers who come in each day to support caring for our young man.  We have had to become accustomed to a new world of PPE – masks, gowns, visors, aprons – which is difficult to experience in our home but as time has gone by, it has become more normal.  We have missed very much being able to visit the local woods and wildlife park, and for most of the lockdown, we could not leave the garden and so almost created a track around the garden where we would walk Lewis in his wheelchair for hours each day.  We have recently been able to walk up and down the drive outside and a very kind neighbour has let us use her drive as well so we had a change of scenery.  In the past couple of weeks we have also been able to have very careful visits to the local woods but avoiding people at all times.  With the government easing the lockdown, our job of keeping Lewis safe has become much harder, and despite the pausing of shielding on 1st August, we continue to protect Lewis as much as possible and are continuing to shield.  During the lockdown period, we have taken up stone painting and have been able to leave over 100 hand-painted stones in the local wood which we have been marking with #TeamLewis and also #PostPals to hopefully raise some awareness as well as making people smile at finding random pretty stones on their wood walks.  Lewis has grown a lot in the past 12-18 months and so caring for him is very different, involving slings and hoists and larger equipment.  We are struggling to find a chair he can upgrade to as the one he has is ‘adult’ size but due to his severe scoliosis and hip dislocation, he needs to be in an unusual position which makes regular chair shapes very difficult for him.  Our priority for Lewis is comfort as his physical condition can not be fixed with a seating system to try and correct his problems.  As he is too vulnerable and high risk for any kind of surgery, it is very difficult to be able to delay the continuing deterioration of his physical condition as he grows and his bones fuse.  This is causing him a lot of pain and he often cries now which in the past was a very rare occurrence.  Additionally, his seizures are increasing in frequency and also in strength and this can cause him a lot of pain and distress too.  This means he is often sleepy just from managing his pain every day and we are reluctant to introduce any stronger pain relief medications as this would have an impact on his ability to enjoy life as he would be approaching a state of sedation.  This is the kind of thing we will have to face as Lewis’ illness causes him to deteriorate further and we are finally forced to accept ‘end of life’ care, but for now I am fighting this battle alongside my very brave boy.  Lewis does not generally attend hospital appointments as all his care is done at home and he has his ‘hospital’ at home which is similar to what you would find in an Intensive Care Unit.  He has to have someone trained and awake with him at all times, including all through the night, to ensure he is safe and that his airway is clear and his ventilator is doing its job.  Lewis amazes me every day with how he can be happy and smile and laugh, with all the pain he is in all the time and how he relies completely on others to care for his every need.  He loves to receive his post from Post Pals, as do I.  It truly is a lifeline to know people care about and are thinking of us as they go about their everyday life.   When Lewis is in bed, which is where he spends a lot of his time, he is surrounded by cards and gifts he has received from his friends at Post Pals.  You truly brighten our whole lives, thank you.

Update 29th November 2019

Thank you for the incredible post Lewis has received recently.  Such lovely cards and drawings and letters. We have been very much enjoying The Chronicles of Mr G who is a giraffe and giraffes are Lewis’ favourite!  Unfortunately, Lewis did succumb this month to an infection (a form of pneumonia) which he is receiving treatment for.  We hope this will be the only nasty bug Lewis catches this year and that he can reach 2020 without any more nasty infections.  Even pneumonia has not stopped Lewis getting out and about (with plenty of oxygen on board) as being sat up in his chair and moving about (especially over tree roots and bumps in the woods) does wonders for his chest.  We are very much looking forward to Christmas, especially Boxing Day as Lewis’ daddy and step-mum and step-sister have a family feast planned – yummy for Lewis’ mummy and lots of family and friends for Lewis to spend time with on this special day.

Update 8th October 2019

Hello, and thank you for all the amazing post Lewis has received the past couple of months.  I am afraid I have been a bit slow in thanking people as I’ve had a lot to do at home, caring for Lewis and trying to juggle all the every day jobs as well.  I have nurses or carers to help look after Lewis 24/7 but with staff leaving and others having holiday, it has been more stressful than normal, but I hope it will settle down soon.  Lewis has been up and down.  He went through a phase of having a lot of seizures, and his digestion failing most days.  It was very worrying as each of these episodes could be the one where he does not recover.  However, as of this week he has been doing so well, I have just been enjoying this precious time with him where I have been able to put aside my every day worries for a little while and just enjoy being with my boy.  We have been getting out into the woods every single day to walk Phoebe and to our local wildlife park (where we have an annual pass) most days during the week.  We had the most amazing time at the Post Pals Party in June and then the Strongbones Party in August but now we are staying closer to home.  Lewis has received such lovely gifts, letters and cards, and as always we keep them all and I do try to reply when I can, it just sometimes takes me a while.  We love to put Lewis cards and postcards on display in his room and we swap them over when new ones arrive, but the old ones are put up in the summer house – we have several years of post cards up on the walls!

Update 9th August 2019

It has been a while since we last updated, which I do apologise for.  It has been a very busy and stressful few months trying to sort out equipment and training new carers to help to look after Lewis at home.  Lewis has continued with his growth spurt and is now wearing adult sized clothes.  We have had to review his medications and his wheelchair, he has a much larger bath, and we have had to accept that we can no longer lift or carry Lewis – he has to be hoisted at all times.  This has been difficult in itself as lifting and carrying Lew was always a great way to sneak a cuddle but it is now unsafe and dangerous for Lewis to try and lift him, so hoisting it is.  We were able to purchase a secondhand wheelchair-adapted vehicle which is enormous – basically it’s a minibus with a ramp so that we can wheel Lewis up into it in his wheelchair.  This has given us so much freedom to get out and about further afield. However, with this new freedom we discovered once we arrived at places, that we couldn’t move Lewis out of his chair to change him or give him a much needed break from sitting, and so we applied to a charity for a portable hoist which means we are now able to take Lewis to places where there is not a proper Changing Place.

This meant most particularly that we were able to attend THE POST PALS SUMMER PARTY in June which was absolutely amazing!  We stayed away from home for two nights and although it turned out to be the hottest weather on record for this country, the shade of the trees at the party meant Lewis was able to have a really amazing time, catching up with Post Pals friends and enjoying the magical atmosphere and activities.  We were even able to hoist Lewis on to the pirate ship bouncy castle where he laid and had some time with the lovely Post Pals Vikki and we were able to chat about Post Pals events coming up in the future which Lewis will be able to access, his health allowing, now we are able to get out and about much more easily.

Now Lewis is 15, his consultants have begun mentioning ‘transition’, which is quite simply a very scary time for us to think about Lewis transferring to adult services.  It has not been something I have considered until now as we did not believe Lewis would reach that stage.  I remember his 3rd birthday party where we did not think he would have a 4th birthday and now here we are fast approaching birthday number 16 (February 2020).  As part of this transition process, it was decided Lewis should trial the kind of tracheostomy tube most commonly used in adult hospitals.  This did not go well, and as a result, Lewis was put through a quite traumatic procedure to swap tubes.  The new tube did not suit Lewis at all and within 24 hours he was back with his usual tracheostomy tube, but in that short time he did contract a nasty bug and was treated for pneumonia.  Thankfully he’s been fine since he finished his course of strong antibiotics and we have put that experience behind us.

More recently, one of our cats, Arthur, had to be put to sleep as he was very old and had become very ill very quickly.  It was a very sad time for us and brought the whole subject of death to the front of our minds for a time.  Knowing Lewis has a terminal illness is always in the back of my mind, but I do strive every day to keep it tucked away so we can try and enjoy every moment we have with Lew while he is with us now today.  With this in mind, we were able to attend the Strongbones Charity party this month which again was a magical day, but just a day trip, no hotels needed this time. Just this week I was brave enough to have a go at driving Lew’s great big blue wheelchair van – I have been putting it off as I was quite scared, but one small step in the right direction and hopefully many more trips out can be planned now I do not have to arrange them around who is available to drive us.

We have been able to spend a lot of time out in the garden with Lewis with the lovely weather, although we do have to be very careful of him in the sun as his medications for epilepsy do make his skin incredibly sensitive to the sun and it can be damaged very easily, even in the shade.  Lewis has loved receiving more bright and colourful post and we have discovered that with the help of velcro, we can stick postcards and dangly toys from the roof of his wheelchair van so he can enjoy looking at them when we are travelling. I do have a small pile of Lewis’ lovely Post Pals post which I plan to reply to when I have a little bit of time as we do love to send return mail if we can – sometimes it can take a little while though!  Thank you for bringing us smiles every day.  It is always such an encouragement to keep going,  knowing there are so many people who care about and think of Lewis.

Update 11th February 2019

So a lot has happened since our last update in November.  Of course we had Christmas, which seems like a very long time ago now that the sunshine and longer days have started already.  We have been enjoying the annual pass we were able to get for the Yorkshire Wildlife Park, which we have also discovered we can walk to!  So we try to go at least once a week and more often if we can.  We have to take a trolley with spare equipment on it as although it is only 4.5 km from home, it is a long walk (about 35 minutes) so each visit is a well organised and planned outing with Lewis, Mummy, a nurse and a carer.  Lewis’ favourite at the park is the giraffes because we can get so close to them, and they are so easy for him to look at from his wheelchair – upwards!

 

We still manage to go into the woods to feed the ducks several times a week too, with Phoebe. The bluebells are already starting to push out of the ground so it will be full of colour soon.  A really kind man who walks his dog Ruby in the wood also likes to make furniture from fallen trees, and he has made a couple of benches to place in the woods.  Well, when we were there feeding the ducks one day, we were chatting to him and he said he would like us to help him decide where to put his next bench.  We chose a spot, and the man said he would name it Lewis’ bench and he is going to also carve Lewis’ name into it which was really lovely!

 

Lewis has loved receiving his bright and colourful post, and we really do appreciate being able to write back if a return address is included.  We have recently swapped some of the colour post that Lewis has around his bed, hanging from the ceiling, so put some of his more recent post up there, but we still keep the older post as it is very precious to us.

 

Lewis’ seizures had increased again in December and January, so we saw his neurologist who advised increasing one of his medications.  This has so far proved successful and so we hope we can have some seizure free time for at least a little while before we have to think about increasing his medications again.

 

It is so hard to believe Lewis will be 15 this month (February 2019!).  I remember when we had his 3rd birthday and we did not expect him to have another one, and yet here we are 12 years later.  Truly a miracle.  Sometimes I forget just how brave and strong Lewis is as he goes through so much, and yet he still smiles and laughs.  He is my hero.

 

Thank you again to our Post Pals family for the lovely cards and letters and gifts.  Every item of post makes such a difference to our days.

Update 11th November 2018

Hello.  So since our last update Lewis has had a growth spurt and is now to big to be transported safely in the VW camper!  Thankfully, most of the cost was involved in purchasing the equipment needed to run Lewis’ ventilator while out and about and this will be easily transferred to the WAV (wheelchair adapated vehicle) we have now got to get.  We had to test out a couple of options – one was enormous and scary and I do not think it would have ever left the drive!  The second option is much smaller but more manageable and so we have gone for this one and it should be ready early next year.  As we have got a thirst for freedom now, we have managed to purchase very cheaply a second hand WAV which is 18 years old, but has a lift and fixings so we can take Lewis in it in his wheelchair.  It is ginormous but already we have been able to go out to the local outdoor shopping centre for a wander round and we even got to look at the Christmas lights today.  We will use this second hand WAV until the new one arrives and then we will be able to sell it on to someone else in need of a timely bargain!

An unfortunate side effect of being able to get out is that Lewis is coming into contact with more germs.  He has caught another cold and we think it may have gone to his chest again so we are waiting to see if he can recover on his own or if we will need to have antibiotics again.  The last bug he caught was so nasty that we were told the best thing was to take him into critical care for a course of IV antibiotics but we discussed any other options and we opted to try the nebulised antibiotics first which on this occasion were successful.  The nebulised antibiotics are distributed directly into his lungs via his ventilator.  We have some more of these antibiotics ready on standby in case he has grown the same nasty bug in his lungs this time but we are hoping he will recover on his own.  On top of this, with his growth spurt, his seizures have increased greatly not only in quantity but also in their severity.  This has meant he has required his rescue medication three times in less than 3 weeks (usually he might only need rescue medication 2-3 times a year!).  We have put this increase in seizures down to his growth spurt so are in the process of increasing his anti-epileptic medications to hopefully control his seizures again for a while.

We have recently also re-started baking with Lew and our favourite recipe is mayonnaise chocolate cake!  It was very strange to put mayonnaise in our cake mix but once we had tasted it we were converted!  We are now trying to find ways to make it healthier.

Lewis has received some lovely post from Post Pals, lots of postcards and letters.  He is also quickly filling up his lanyards with badges which is great.  These hang on his bed so he can see the bright colours and designs.

We have found that getting Lewis out in the fresh air most days has really helped him in lots of ways so we are trying to walk Phoebe and feed the ducks in the local woods most days, even when it is getting dark and chilly!  We are getting quite expert in this leaving the house thing!

Lewis continues to enjoy his stories and of course his favourite ever which is watching cartoons on TV!

We were able to get out in the garden briefly with some sparklers on 5th November but Phoebe had to stay inside as she is very scared of the noise!  Our next plan is what to do for Christmas.  Last year we went Hawaiian but this year I think we are going back to traditional and hope to start decorating on December 1st.

Lots of love from Lewis and I to all Post Pals and friends and family.  Thank you for giving us your support and comfort every day.

Update 15th September 2018

Hello.  So this month we had the first trip out in the renovated VW camper van with Lewis and we decided to go to Cleethorpes (the closest seaside to us).  It was a miserable rainy day and chilly too but it was still so amazing to get out with Lewis somewhere in the VW and to enjoy what was as close to a family day out as we can manage.  We got to catch up with some lovely friends, including an almost birthday buddy of Lewis’ who was born the day before him!  It was hard to see how Lewis should be (if he didn’t have batten disease), as his buddy is at school and working hard and is all grown up and of course Lewis loves Cbeebies and cannot move.  Even so, it was amazing to catch up and to have a hug from our lovely friends.  Lewis was very tired out after our trip and it did cause him to have some seizures, and sadly since then he has caught a cold which has developed into a chest infection, so he’s on antibiotics for that and we can’t leave the house at all for a little while until he’s fully recovered.

Lewis has discovered his new favourite programme called CloudBabies, but he still loves his other favourite DinoPaws and of course Tom & Jerry and Donald Duck are still firm favourites!  It is so special and wonderful to see Lewis’ shoulders shaking with laughter and his laughter makes us laugh – it is so infectious!

Thank you to lovely Bev, Faye and Natashja for the Post Pals post Lewis has received this past month or two. We really love getting cards, postcards and letters, but especially the postcards as we can put them up in Lewis’ room above his bed where he can see them.  It is especially heart warming to receive Post Pals post as we rarely leave the home now as Lewis’ carers and nurses are not allowed to be alone with him, so I (mum) have to stay indoors with them all the time so we are getting a bit stir crazy!

Thank you to everyone for all your loving support for Lewis.  It is a comfort to know people do think of and care about us.

Update 20th July 2018

Hello from sunny South Yorkshire!  Lewis has not had any real dramas since our last update.  He is not coping with the hot weather so we spend a lot of time indoors with fans and portable air-con pipes sticking out of the windows.  Very strange to have this lovely weather and have all doors and windows closed wearing woolly socks and jumpers!

On days when it has not been too hot, we have finally been able to get Lewis out in the woods with Phoebe (our crazy dog) in his jogger chair for short walks.  We have been loaned on trial a different kind of ventilator which has a nebuliser running through it for up to 6 hours which is similar to being on a humidified ventilator so we are giving it a try!  With Lewis, since his pneumonia over Christmas, the lower parts of his lungs (which are already a bit messed up) can easily fill with secretions created within his lungs which then can dry out and go hard and block the lower areas of his lungs.  Once this happens it is only a matter of time before the blockage gets worse as the secretions sit on top of the dried out ones until finally the lung blocks up as its so full of rubbish that it can not breath effectively.  So to avoid this, the humidified ventilator pushes air into the lower parts of Lewis’ lungs which is nice and warm and wet to stop the secretions from drying out.  If Lewis does not have the humidified ventilator, but just has the dry ventilator then the secretions are at risk of drying out resulting in the lung blocking off which is why we haven’t been able to take Lewis out since Christmas – the humidified ventilator does not run on batteries and so needs to be plugged into the mains electricity all the time.  This new vent runs off battery and the nebuliser can run for up to 6 hours.  So we are giving it a try and hoping it will give Lewis some freedom!  Unfortunately not as much as we hoped however as with Lewis’ decline he has become very anxious in unfamiliar surroundings so a trip to the cinema just this week to see Incredibles 2 did not go so well.

We are still working on the VW camper van which will have a bed in the back so that travelling with Lew will be ultra comfortable!  We plan to use this once it is finished to take Lewis to the seaside (Cleethorpes).  The van will have a power inverter and leisure battery in it so it will be like taking our household electricity with us!  We can plug all of Lewis’ equipment in and maybe even a little TV so he doesnt miss his cartoons! We won’t be able to travel far in it as it is 45 years old (!), but we think journeys of up to 1 hour should be fine.

Lewis has put on quite a lot of weight and length since Christmas so we have had to have ceiling track put in over his bed to be able to hoist him for bathing, etc.  We are also waiting for a much longer bath as he has grown out of his old one!  This has meant we have had to move a lot of Lewis’ Post Pals cards, postcards and pictures from above his bed, but we have just found new places to hang them so he can still see all his lovely post when he is laid on his bed!

Update 3rd June 2018

Earlier this year we started fundraising for a camper van which we could use to get Lewis out of the house.  Lewis has been unable to leave home since before Christmas when he had a particularly bad chest infection, this means that he now cannot cope on a dry ventilator circuit and now has to be constantly connected to a humidifier – this has no battery capacity and needs to be plugged in all the time.  So we have found out about leisure batteries and pure sine inverters!  Amazing the things one learns about on this journey with a poorly child.  We have an old (45 years old!) VW van which is being renovated and kitted out for Lewis, as he also cannot sit up and needs to be always laid down.  This means we can take him out of the house in the van laid down in the back on the bed which will be fitted with a special seat belt system.  We really are hopeful we can get to the Post Pals party next month!  This past week we have learned that Lewis now relies completely on the ventilator for his breathing and so this makes the right equipment all the more important.  Whereas before he needed the ventilator to help him to breath, now he cannot really breath without it.  It’s another part of his deterioration with his illness and I feel so lucky now that Lewis had to have his tracheostomy and ventilator back in 2013.  Without it, Lewis wouldn’t be here now.

Lewis continues to enjoy Cbeebies and we now have an App on the TV called Disney Life, so we can catch up on lots of Donald Duck and Pluto cartoons which are Lewis’ absolute favourite!  Lewis continues on the blended diet and his array of herbal supplements to help him to be as well as he possibly can.

We both get quite fed up of being stuck in the house all the time (6 months now!) but now the weather is nicer and there are less bugs around, we are getting more visitors.  Also, it means the absolute world to us to receive cards and letters from our Post Pals family.  They really do brighten our days.  We put cards up in Lewis’ room (what used to be our dining room) so that he can see them and we hang dangly gifts around his bed too.  I always try to reply and say thank you for cards and gifts and letters, so please do leave a return address or email if you would be happy to receive a thank you from us.

Hoping to see lots of friends on 7th July in Effingham! Love always from Lewis and Samantha (and Phoebe the dog and Arthur, Chelsea, Aoife, Bianca, Benjamin and Nicolas the cats!)

Update 6th February 2018

Lewis will be 14 this month. We honestly never believed we would reach this point with Lew but every day he amazes us with his strength and resilience. His health has been bad during December and early January with chest infections and seizures and 100% reliance on the big ventilator. This has meant we have not been able to get Lewis off his bed, but just this last week we have been able to get him on his beanbag in the front room for short periods of time.

Lewis’ illness, batten disease CLN14, remains a terminal illness without treatment or cure, but with an incredible team of carers I think we are doing ok. Lewis has had a growth spurt recently and so we are awaiting a longer bath and some hoisting to be put in place as he’s getting too long and heavy to lift. Lewis is very tired a lot of the time but still manages to smile and laugh at his favourite cartoons and people.

We love to display Lewis’ Post Pals cards, photos and drawings around Lewis’s bed by his twinkly lights on the ceiling.

We are feeling very brave and have booked a hotel for 3 nights so we can hopefully come to the Post Pals summer party in July.

Every morning that Lewis wakes up is an absolute blessing to us. Every seizure he has could be the one that takes him from us so we try to squeeze every drop out of every day, but while still keeping Lewis safe at home. This year we want to try and see some friends from the south of England and hope to achieve this while we are in Woking and Effingham in July.

We love our Post Pals family so much and your post always makes us smile and feel so special. Thank you for all the smiles you have brought us over the years since Lewis first became ill in 2006. We don’t know how long we have left with Lewis but we’re incredibly lucky to have you all share this journey with us.

Update 16th November 2017

I can’t believe it’s November already. Lewis has had a few bad chest infections this year so we are prepared for the worse over winter and are avoiding going out or having people visit in case they have germs. It gets quite lonely and boring at home so we are watching a lot of movies and reading a lot of books! Lewis loves being read to but nothing beats a good cartoon on the tv. Capturing Lewis laughing is always magical!

At the moment we have a different battle going on – trying to work out what is upsetting Lewis physically. He is in a lot of pain most of the time but we cannot pinpoint what is causing the pain for him and so it’s very difficult to be able to help with easing it. We will persevere.

We are all looking forward to our Hawaii Christmas and hope Lewis will be well enough to enjoy it.

I have spent several months since Lewis’ 13th birthday worrying that he is on borrowed time and never dreaming we would make it this far into 2017. Now Christmas is approaching which will soon lead to 2018 and Lewis’ 14th birthday and part of me is excited to greet this new milestone but most of me is so scared knowing that getting to those dates with Lewis would be an absolute miracle. Scary times.

You may remember that Lewis had very long hair for a few years as we let it grow while he was in critical care for half of 2013. Well we cut Lewis’ hair short in October 2016 but now we are letting him grow it again!

Thank you to all Lewis’ amazing post pal friends and the incredible Post Pals team who continue to surprise and move us with the lovely postcards, letters, cards and gifts.

We hope you all have a wonderful December ♥️

Update 6th October 2017

Hello. Well, it’s been a busy few months as Lewis has continued to have severe chest infections and increased risk of pneumonia, so we have had to avoid people and leaving the house most of the time to keep Lewis safe from coughs and colds.  Each chest infection has left more lasting damage in Lewis’ lungs, so he is now on the humidified ventilator 24 hours a day with very high ventilator pressures to keep his lungs from collapsing.  To make it easier to care for Lewis now he has to spend most of his time in bed, his bedroom is now in what was the dining, right next to the kitchen and the lounge.

In September, Lewis was best man for his Daddy and Daddy’s new wife Emma at their wedding.  It was a very special day for us and even the local newspaper did a front page story about it.

Lewis has a new favourite which is Stitch from the Disney movie Lilo and Stitch.  We now watch Lilo and Stitch every single day and he loves it so much that we have decided that instead of having a traditional Christmas this year, we are going to have a Luaua Christmas – the reasoning behind this is that (as with everything in our life with Lewis), this may be his last Christmas, so instead of it being dark with dark reds and greens, we will have a bright colourful Hawaiian Christmas!

Lewis has been receiving such lovely postcards and photos from Post Pals friends, so we have purchased even more LED pegs to go above his bed.  When Lewis receives new postcards or photos, we hang them up above his bed so he can see them all the time, so thank you to everybody who has sent Lewis such lovely, bright colourful post!

Lewis has also received some amazing gifts from Post Pals and we cherish them all – THANK YOU!

Update 6th July 2017

Lewis has had pneumonia twice, almost back to back this past few months so had to have a 2-week then another 4 week dose of strong antibiotics to try and clear up the second round.

This has meant he has not been able to come off his humidified vent, and therefore has not been able to leave the house for quite some time, but we have been gradually doing very short trips on the dry vent to see how he copes. He has managed ok initially but then after a few hours the after effects have caused breathing difficulties and low O2 saturation levels.

However, this week, with lots of preparation, we have taken Lew Lew to the local cinema to see Despicable Me 3 not once, but twice! And we plan to go again next week!

It isn’t out on DVD until November and we can’t wait that long without seeing it again!

We sadly had to miss the Mad Hatters Post Pals Party last week for two reasons. First, our lovely family friends, Sam and Barry, had their wedding vow renewal day that day (where Lewis spent most of the day laid on the sofa with CBeebies and his ventilator!) – it was a beautiful day and Lew Lew got to see lots of pretty ladies in their posh frocks!

Secondly, with Lewis’ lung health being so poor now, we couldn’t contemplate such a long journey away from home with him having just got over pneumonia.

Lewis has received some wonderful cards and letters this past couple of months and some fabulous gifts! Thank you all so much!

We will be doing some personal thank you’s very soon so please, if you would like us to reply, remember a return address (and print clearly as my eyesight is getting old – like the rest of me!).

Looking forward to seeing lots more photos from the Post Pals Party!

And thank you for all the pet photos which we do put up for lewis to see.

Update 1st January 2017

Like a lot of Post Pals families, there has been a lot of illness here. Not only Lewis, but mummy, daddy, close family members and nurses!

Lewis has been struggling with some very painful issues with his hips, spine, digestive system, his seizures, and coughs and colds. He still smiles and laughs though – they are just a little bit harder to find.

Lewis has had some incredible post in 2016 and now (hopefully) everyone is recovering, we will be able to go through the return addresses and personally thank every one of you.

Now we are in 2017, Lewis has his 13th birthday in February. Lewis’ condition means his life expectancy is 10-12 years old so it’s very worrying for us as we are on borrowed time.

All I can say to you all is how special and precious and truly joyous you have helped to make these years with Lewis and what wonderful and lifelong friends we have made on our journey. Let us hope Lewis can prove the numbers wrong and stay with us this whole year.

Much love to all, especially the amazing young women at Post Pals Central

Update 12th October 2016

Lewis is doing ok at the moment. His seizures are gradually increasing, and his bone/joint pain is intermittent but each time he has a bout of pain, it seems to hurt him more than ever. Heartbreaking to see the pain in his eyes. But despite all that, he still smiles and laughs and his Trachy has developed a small leak (air can pass the tracheostomy tube and pass the vocal cords) which means we get little tiny surprise bursts of sound from him – it’s so amazing to hear his beautiful voice, even if it is just for a split second.

It is Lewis’ step sister’s birthday this weekend so we are looking forward to going to her birthday party. Poppy will be 6!

Our rescue kitten Benjamin is growing fast. And another rescue cat which adopted us last year (Arthur) is recovering from being lost for 4 months and coming home looking like a skeleton cat. Lewis loves having the animals around him, they often make him laugh, especially when they are making a lot of noise!

Lewis is loving receiving postcards and now the weather is colder, we shall be spending more time in his sensory room where all his postcards decorate the walls and ceiling.

Lewis has a lot of toys he cannot play with and so we are going to sort through them gradually and hope to send them to fellow pals.

We have the Alice in wonderland post pals party to look forward to next year as well x

Update 17th August 2016

Hello! It’s always scary to say we are doing fine, but we will be brave and do it! Lewis has been stable for a couple of months now. The odd seizures, but nothing we couldn’t manage at home. The weather has had its moments of being too hot for Lew Lew but it has meant afternoons indoors with the fan and CBeebies so he hasn’t complained! Lewis has received some beautiful post this past couple of months from our wonderful post pal friends – his postcard ceiling in the sensory room is looking amazing!

On 27th August Lewis is having a party arranged as a wish from Rays of Sunshine Charity. We have lots of children as we wanted it to be a party for lots of children so if you are local to Doncaster and would like to pop along, please send a message through Lewis’s Facebook page or through Post Pals website.

With the passing of time, Lewis is getting older, which is scary because it means we are running out of time, but it also means we are putting even more effort in to making amazing memories with him. As Lewis’ classification of NCL/Batten Disease is so rare, he is the only child in the world of his age known to have this mutation so we don’t know what will happen or when. There is one other little boy we know of in India and he is much younger than Lew Lew. He’s also absolutely gorgeous just like Lew Lew!! Every new day with Lewis is a gift for us to treasure.

Love to all our friends who are now like family. Any post received with a return address will eventually be replied to, sorry if it can sometimes be quite a long while!

Update 5th July 2016

What an amazing month June has been. We got to go to two spectacular parties.  The first was with Post Pals and I cannot describe how special it was, and what an amazing day we had.  We met old and new friends, we met Post Pals we have been communicating with for several years. There was a lot of hugging and a lot of love!  The party itself was quite simply the best party ever!  We all had such an amazing time – it was truly a day of a lifetime.

Lewis hasn’t been too great over the past few weeks, with seizures and generally being under the weather, but we have carried on taking care of him and doing all we can to make him smile!  He always loves receiving post with his name on! Lewis now has a platform outside his bedroom patio doors so that when he is particularly poorly, we can wheel his bed outside on to the platform so he can still enjoy time in the garden and fresh air.

I was clearing out the spare bedroom just this week and I found a big pile of Lewis’ Post Pals postcards, so they are now in the sensory room on display with the rest.  Some of them go as far back as 2010, so Lewis and I will be replying to the postcards which had return addresses on.  They all look so amazing in Lewis’s sensory room – such a bright and colourful way to decorate the walls and ceiling!

Update 3rd May 2016

Lewis and I have received some lovely post this past few weeks and I have kept my cards out on display – they really do mean so much.

Thank you to Post Pals for the butterfly growing kit. We aren’t ready to start ‘growing’ yet, but will take photos once we do. Lewis also received some super soft toys from Post Pals. Lewis loves puppets so our collection is getting very exciting for our puppet shows to help Lewis laugh! Also he loved his deer blanket cuddly and his wobbly head Fraggle!

A particular thank you from me to Bev for the lovely card which made me chuckle!

Lewis has been unwell quite a lot over the past few weeks, including a hospital admission for uncontrollable seizures. We manage almost all of Lewis’ medical care at home. Sometimes we need some extra help, but since his recent admission plans are now being discussed to be able to give Lewis IV medication at home.

Lewis has been in a great deal of pain with his scoliosis and hip problems so we are trying to balance Lewis’ pain management without losing the essence of Lewis in sedation.

Lewis has very much enjoyed spending time with his new step-sister, Poppy, who is 5. Poppy is busy trying to teach Lewis’ dog, Phoebe, new tricks, which is always fun!

We look forward to seeing everyone at the Post Pals party in June . Poppy will be coming too which will make Lewis very happy.

Update 13th April 2016

Lewis has had a chest infection which needed antibiotics. The antibiotics caused him a very upset tummy which he is just getting over now, a week after finishing the antibiotics.

On top of that, the past few nights Lewis has been having very bad seizures which have now spilled over into the daytime while Lewis is awake (mostly his seizures only come when he’s asleep). Today is a battle to keep him out of hospital as he has had his rescue medication but, so far, it has been ineffective.

Hoping Lewis can fight this and we can stay at home. We have HDU at home so admitting we have to go to hospital is pretty serious for us.

Thank you for all Lewis’ amazing post. We will take time to thank everybody once Lewis is feeling better and things can go a little more back to normal.

Update 16th February 2016

Well January started off really slowly, but now we find ourselves in the second half of February, and almost to Lewis’ 12th Birthday! This is pretty spectacular as when we received his diagnosis of NCL / Batten Disease, they said 11 years old was the expected life expectancy. So to be getting to 12 is something to celebrate! We are having a kind of party in the local Pizza Hut and so far 44 people are coming! (they are all paying for themselves, though!) And we have arranged a surprise visit for Lewis (but, shush, don’t tell him!) of Upsi Daisy and Iggle Piggle from In the Night Garden!

It seems that everyone around us has succumbed to a horrible flu-like cough and cold, so we are trying very hard to avoid getting that in our home. Something like that can be a massive problem, not only for Lewis and trying to keep him away from hospital, but also for myself and his nurses who need to be fully fit 24/7 to look after him properly!

Thankfully, since our last update, Lewis hasn’t had too many seizures (everything crossed, as usual!) and I’m pretty sure he’s having a growth spurt. I’m going to have to sort out his clothes as a lot of them don’t fit his long legs anymore, and some of his t-shirts are just too short! It’s lovely though to know he’s growing, because, of course, that gives us hope that he’s doing well at the moment!

Sadly, just today, our eldest cat passed away. She was almost 17 years old and she died in her sleep. We still have 6 cats left and, of course, our crazy puppy, Phoebe, who was a year old the day before Valentine’s Day! Thank you so much for Lewis’ lovely Valentine cards! He was very much spoilt!

Post Pals cards and gifts have already begun arriving for his birthday at the end of this month, so they have been put safely away until the special day!

We will be taking lots of photos at Lewis’ birthday party, and thanking everybody for your lovely cards and gifts! Could I just ask, people who send Lewis post – please could you put a return address in as we are now more organised here and Lewis is enjoying helping me to reply with personal cards and letters as part of our home education!

Update 3rd January 2016

What a busy December! Lewis had two interactive Post Pals advent calendars to open, from Nanna Lyn and from Grace & Henry, plus a picture advent calendar from Bev, and a WOW advent calendar from Post Pals which we had so much fun with.

Lewis received such lovely elf gifts and we have tried to individually thank everybody for the love and kindness shown to us this Christmas – even I got some gifts which were so lovely and a really precious surprise!

With Lewis, being busy seems to automatically mean being unwell. He has had a bad chest early in December, and then unexplained (so far) temperature spikes and random seizures. He is still unwell but we hope he will start to pick up soon.

We look forward, as always, to warmer weather so we can get out and about more.

Lewis no longer attends school due to his illness so we do educational activities at home as much as possible.

Thank you for another wonderful Post Pals year with Domino (Dottie’s litter pup), the monthly projects, and the wonderful friends we now consider family who we made through post pals.

Update 13th October 2015

Hello.  Well, here we are in October.  What happened to September? Lewis has been stable since his seizure scare last month.  A tweaking of medications has sorted him out for now so hopefully goodbye to nasty seizures for a while. We are now getting settled into our routine together. Since Lewis’ care package reduced from 24/7, Lewis and I now get to spend from midday until 10pm each day on our own.  We have fun trying to think of things to do each afternoon, ranging from baking, making cards, painting, watching funny music videos on YouTube, snuggling on the sofa with a family movie, or, if the weather is nice, getting outside with crazy Phoebe puppy in the garden.

Since Lewis’ care package has been reduced, its been a lot more difficult to get out of the house, but a lovely friend who lives right down south near the sea (Dorset) has very kindly donated her daughter’s specialist car seat to us so I can get to take Lewis out on short trips in the car on my own.  Can’t wait to get that little bit of freedom back!  Before Lewis had his tracheostomy and ventilator, we were always off out and about together!

We have been planning what we will be doing for Hallowe’en, Bonfire Night and, of course, Christmas!  We have to plan these things early and then hope that Lewis stays well enough to actually do the things we plan!  We are being brave this year and spending Christmas away from home with friends.  As you will know by now, we avoid hospital at all costs!  All of Lewis’ medical care is done at home.  If it’s bad enough to go to hospital, it’s bad.

We have a huge fish pond in our garden which we were able to completely revamp with the help of donations from charities.  It is a special sensory pond which Lewis loves. Now the nights are drawing in we get to see the twinkly lights much earlier – a good side of the darker nights coming with winter!  In the summer, we put Lewis’ two fish tank fish into the pond to see how they would cope with the bigger pond fish.  Well, we are pleased they have grown really fast and are four times the size they were when they went in!  They are called Makka and Pakka (after my favourite TV programme, In The Night Garden).  We hope they will all survive ok when the really cold weather comes.

We are hoping to be able to go and visit one of our Post Pal friends soon as well, Lewis’ health willing!

Thank you to Lewis’ Post Pals for all the amazing gifts, cards and letters he has received since our last update.  Don’t forget, we are decorating the ceiling of Lewis’ sensory room with postcards!  Also, if you send post to Lewis, please please put a return address or email in so we can reply.  We take a while to reply, but we do get around to it eventually!

Update 24th September 2015

Hello. So the summer is over and we are looking forward to Halloween here now! We are enjoying the latter sunny weather and Lewis is spending a lot of time out in the garden around his sensory pond. We have taken advantage of the shops selling off all their summer garden lighting and ornaments to make Lewis’ sensory pond even more spectacular, and of course because its now getting darker earlier, Lewis can enjoy the lights before bedtime.

Healthwise Lewis is pretty stable. He has had some of his anti epileptic medication increased because of his seizures getting worse at night, and he’s also had the pressures on his ventilator increased to help him breathe better when he’s asleep at night too. As we come into the colder weather though, Lewis’ health is at more risk of deterioration because of the winter bugs like flu and RSV, so we have to start being extra careful with him, especially around people, or in areas where bugs will be flying around! This can make life pretty boring, so we try to do lots of fun activities at home as much as possible without wearing Lewis out.

We are preparing our outfits for Halloween again and we have decided we will be characters from the film Corpse Bride. We love to have trick or treaters visit us on Halloween night (only the treaters though, no tricks please!) and so we decorate the garden to encourage children to visit, and we have the big patio door open and wait patiently with a huge bowl of sweets and treats!

We still do wonder if Lewis will ever have to not have his tracheostomy, but we know that in reality, it has saved his life and that it will not come out as he relies on it too much, more and more as time goes by. So although its horrid and it makes life so very difficult, it means that Lewis is here with us to enjoy and to love. And as always, he still manages to wow us with his gorgeous smile and his amazing laugh (silent laugh because his tracheostomy tube blocks his voice). It is the best thing ever to see his eyes crinkle up and his shoulders shake when he sees something super funny – usually Iggle Piggle and UpsiDaisy sneezing, or Big and Small playing on the swing!

Thank you to the amazing ladies at Post Pals for making it possible for us to reach out to such a wonderful group of people (Post Pals volunteers and friends) and for the wonderful friends we have made on this journey so far. We are often slow at responding to Lewis’ wonderful post, but if you give a return address or email we do get there eventually! Promise!

As you know, Samuel, Lewis’ older brother, is 22 and at university now, but when he was younger he loved being part of Post Pals too as a sibling.

Update 14th August 2015

Thank you this month to Post Pals for the very cute knitted doll! Also, for the lovely cards and gifts Lewis has received. We would like to say a really huge thank you to Teresa and Clive (who we met through Post Pals) and who were able to come and spend the day with us for Lewis’ Naming Day last month.

So many children we know have passed recently and there have been so many funerals. This set me to thinking that people pull out all the stops to attend a funeral, especially that of a child, but they often don’t make the same effort to visit when the person is still alive. I wanted to celebrate Lewis while he is still here and so I came upon the idea of a Naming Day to bring everybody together.

We had a great turn out and it was an amazingly special day with so many memories made. Friends from all over the UK came to the day and made it extra special. Meeting Teresa and another friend we had met online (but never face to face) was so wonderful. I am so happy so many people got to enjoy Lewis’ special day WITH him, rather than everybody coming together for the sad occasion when Lewis leaves us to become an Angel. I would encourage parents of terminally ill children to do this as although it is incredibly emotional, it is a happy day of celebrating. It was wonderful.

Lewis is pretty much stable health wise (everything crossed as I type that!) although his lungs are struggling day to day and we do have difficulties with his SATs (oxygen levels) every evening now. Lewis’ eyes are sore all the time now from straining to see his favourite DVDs and TV programmes, but he still smiles. Sometimes he even treats us with his amazing laugh, which is silent because of his tracheostomy tube, but his shoulders shake and his smile is so huge and his eyes light up!

Lewis’ puppy Phoebe is six months old now and still as cheeky – it is always funny when she tries to lay on Lewis’ lap as she did as a tiny puppy, because now she just doesn’t fit!

Update 23rd July 2015

First of all, thank you for the amazing paper cut framed gifts we received via Post Pals. We were so overwhelmed, they are beautiful and will be treasured forever.

Secondly, thank you for all the lovely cards and letters and of course our regular Dottie newsletter which we love to receive and always know who it’s from by the giveaway paw prints on the envelope!

Lewis is doing ok. He is having a spate of seizures again. With Lewis’ condition, we will never know if this cluster of seizures is ‘the one’ or if this infection of illness or deterioration is ‘the one’. It can make life very stressful indeed which is why we make sure to squeeze every drop out of every day.

Lewis’ puppy, Phoebe, is growing fast and is very, very cheeky! When she was tiny, she used to like sleeping next to Lewis. She is a big girl now and still likes to sleep next to Lewis but is a little bit too big now so it’s quite funny to watch her trying!

This weekend Lewis is having a naming day. This is like a christening but is non religious. The reason behind this is that we wanted to bring as many people together as we could to celebrate Lewis so that he can enjoy them too. As you know, Lewis’ illness is terminal and so one day everybody will get together to say goodbye. I wanted all those people to get together for a happy time so we have friends giving readings and we hope it will be an extra special day. In true Lewis style, though, he’s starting to get ill!! I hope so much that he is fine for Saturday as we have guests from as fat apart as Scotland and Taunton! It will be busy and the preparation is really stressful but we hope it will all be worth it and that Lewis will have an extra special day.

Lewis’ brother Samuel has been home from university for the summer but is going back at the beginning of August to do his Masters. It’s been lovely to have him home and we will miss him loads when he heads off again.

Thank you again to all Lewis’ post pals in UK and overseas. We do try to get around to sending personal replies in the post if you give a return address or email, but sometimes it takes a few weeks!

Happy summer to everybody!

Update 7th June 2015

Lewis has another chest infection and so is on antibiotics again, but otherwise he is feeling quite well and is very smiley and happy!

He is enjoying the sunshine and has had some surprise visitors this month (May) already, particularly Jan and family from Taunton in Somerset, and our very own Post Pal Leona who is all the way from Scotland!  It was amazing to meet Leona after all these years of her being a regular Post Pal for Lewis!  A very overwhelming and emotional day!

We are really looking forward to coming to the Post Pals Party at the end of this month!

Update 30th April 2015

Lewis has 24/7 care by qualified carers but due to illness, maternity leave, going off to college/university and childcare issues, Lewis’ care package collapsed in March. Since then it has been very stressful as Lewis’ medical/clinical needs are way too much for one person (in other words, me, his mum). For a few weeks we had emergency cover by agency nurses and finally in mid April we started with a new care agency called Thornbury.  This means we have been having a qualified nurse and an unqualified (training) healthcare assistant doing 12 hour shifts around the clock. Consequently, the house is always full and busy with training and teaching new people Lewis’ routines and needs, and both Lewis and I are getting used to having these new people around.

In addition, we finally gave in and got a puppy! She is called Phoebe and she is now 10.5 weeks old and absolutely gorgeous! An absolute bundle of madness and we love her completely! She is brilliant around Lewis, and completely crazy around everybody else until she collapses on the floor in a heap from exhaustion!

To coincide with the new care agency starting, Lewis also got a very bad chest infection. He has been on antibiotics for 2+ weeks now and is still quite poorly with it. He is also having seizures and very high temperatures – all infection related – so we are doing our best to keep him as well as possible while he recovers. We did manage to get out to the cinema recently to see Disney’s Home and he really enjoyed it!

Lewis has had some lovely Post Pals post but we haven’t had chance to take photos of him with it yet to put on his Facebook page. If you have sent Lewis post, we will get around to it, I absolutely promise! And if you leave your return address in the envelope or email, we will also get around to a personal thank you at some point. We make lots of plans to do activities with Lewis but often his poor health prevents this from happening.

Yesterday, Lewis got a visit from the SpecialEffect Charity Team to introduce him to a new, super high-tech eye computer to play games on! They already loan Lewis an eye computer for communications but this new one really is amazing! I expect Lewis will be able to use it sooner than we will learn as he is very quick at picking up the programmes on his eye computer! Now that a new kind of funding has been made available by the government for eye gaze equipment for disabled children, we hope soon to be able to give the charity their equipment back so they can loan it to some other much deserving children!

In July I will be running the Vitality British 10k for the Batten Disease Family Association so I will at some point be begging for sponsorship from all of Lewis’ friends and supporters! Details will be available on Lewis’ facebook in the next few weeks (and then probably every single day after that!).

Update 3rd March 2015

Hello. This past month has been very busy, not least because it was Lewis’ 11th Birthday!

Earlier this month we helped to film a video for the Department of Health about what it is like living with a diagnosis of a rare disease. The video was launched on Lewis’ birthday, which is also World Rare Disease Day! I did mention Post Pals in the interview, but they didn’t keep that part in the final cut, unfortunately. You can watch the video on YouTube
https://www.youtube.com/playlist?list=FLkVX1SK7NCrXR2E5xKoV-jA

Lewis had to go on a strong course of antibiotics earlier this month because his neck wound had got infected. The good news is that the neck wound is looking better although it is still very large and causes him a lot of pain and discomfort, especially at tape change time which happens every day after his bath. He’s so brave!

We’ve also been interviewing some new potential carers for Lewis’ at home care package, as he does have a 24/7 waking fully trained care requirement. The girls who look after Lewis do 12 hour shifts every single day/night and are amazing. We are so lucky to have such wonderful people in Lewis’ life.

And of course we come to Lewis’ birthday! We were overwhelmed by the amount of Post Pals post Lewis has received for his birthday! There was so much post, we did open a lot of his presents on his actual birthday, but two days later we still have a pile of unopened packages! We have been so busy, we haven’t got around to them yet, but we will, and the photos will be on his facebook page very soon!

He had a wonderful day and not one but FOUR birthday cakes! This morning he had a slice of Gruffalo cake blended in with his porridge. Lewis has blended porridge and fruit every morning for breakfast via his feeding tube into his tummy, then he has a healthy lunch of meat, vegetables and potatoes, pasta or rice, and then some fruit later on. He eats very well, considering he is nil by mouth!

As you may know, Lewis’ medical professionals have suggested that due to his illness, he has a life expectancy of 11 years, so you can imagine this birthday was extra special for us. Let’s all hope and pray that Lewis defies the odds and has many more birthdays after this one!

Love and hugs to all Lewis’ wonderful supporters old and new and as yet undiscovered!

Update 31st January 2015

Not long since our last update and nothing much has changed. I have signed up to do the British 10k in London on behalf of the Batten Disease Family Association. I did the same run in 2010 for the charity SpecialEffect. I think I have only just recovered from that run in time for this one five years later!

Lewis is doing ok. He is very noisy with his breathing and seems to struggle a lot, but his oxygen saturations are good so we aren’t sure what is wrong. We have changed his diet to try and put some weight on him as he is only 22kg, so he’s getting a lot of calorie dense foods at the moment to try and bulk him up a bit. He cannot cope with large volumes so we are having to find foods with lots of calories in a small volume. It is a task!

We are currently getting quotes to have Lewis’ bedroom window changed into a patio door as he has a new charity funded sensory garden pond but it is difficult to get him out into it so we will have direct access from his bedroom which will be particularly important when he becomes too ill to really leave his bedroom.

Lewis has had some wonderful post from Post Pals, particularly recently. We do cherish every letter, postcard and gift, and everything has a place. We do try to remember to put photos on Lewis’ facebook page of all his posts so please do remember to check often.

We saw Lewis’ neurologist recently who has given us permission to give Lewis high dose oral rescue medication at home if he starts having seizures again so this will hopefully greatly reduce our need to take him into hospital.

We are very much looking forward to Lewis’ birthday at the end of February. We have The Gruffalo theme going on and are looking forward to lots of Gruffalo type games on the day! We are going to try REALLY hard to come to the Post Pals Summer Party this year as well!

Lots of love to all Lewis’ friends and supporters!

Update 18th January 2015

I’m really sorry, we don’t seem to have updated for quite some time!

Lewis has Batten Disease. The illness we were twice told he didnt have, even though he showed all signs – well finally through a special micro-DNA study, they found a faulty gene which Lewis got from us (mum and dad) which is a new form of (neuronal ceroid lipofuscinosis) Batten Disease which wasn’t diagnosed before because nobody had seen it before.

It has been a difficult journey coming to terms with this, that Lewis has a terminal illness which has a life expectancy of around 11 years.

Lewis has also been quite poorly over the past couple of months, he sleeps alot and is easily sick so he has lost weight. He now weighs 22kg, but he keeps getting taller, so he is quite skinny!

We do still manage to get smiles from Lewis, but he is in constant, chronic pain with scoliosis, kyphosis, discolated hips, unhealed shoulder fracture, pressure sore in the creases of his neck, and other things we probably even don’t know about. On Boxing Day his broviac line dislodged due to tissue granulation, so for a period of time we were not allowed to leave the house or give Lewis a bath because of the infection risk. It has now been removed so we can leave the house again, and Lewis can have a bath!! However it means we don’t have IV access anymore. Luckily, Lewis’ neurologist has agreed that we can give him an oral dose of his epilepsy rescue medication at home so we no longer have to take Lewis into Resus via ambulance if he goes into seizure clusters. The oral dose will take longer to work than the IV dose but will have the same effect overall (to stop the seizures) and it means we can stay home.

Our aim is to keep Lewis out of hospital and to keep him as well as we can for as long as we can so we can enjoy spending time with him and making precious memories.

As we have had such difficulty taking Lewis away from home for any period of time, the Pilgrimage did fall a little flat, but we have been making up for this by using the Fund to buy things Lewis can enjoy at home.

Lewis still loves to receive Post Pals post and continues to recognise his name on his post, although his eyesight is starting to deteriorate slightly. We continue to post Lewis’ photos on his facebook page and tag Post Pals as much as we can.

We have received some amazing post for Lewis and we are now endeavouring to return post if we have return addresses – we are good at the writing and drawing, but just not so good at the actual getting to the post office part! Bear with us!

We are now planning Lewis’ 11th Birthday party for the end of February. It is going to be small and simple, but all Post Pal buddies are welcome to come and visit Lew Lew at anytime, just let us know and we can make plans!

Thank you again for all your amazing support.

Update 18th October 2014

Lewis is doing well. We had a great surprise recently when Lewis was nominated for and won the Outstanding Bravery Award at the Yorkshire Children Bravery Awards 2014 in Leeds. Lewis got to meet the actual real life Chuckle Brothers which was massively exciting as we have loved watching them for many years!

Lewis’ neck wound is healing well so we will soon be ready for him to go into hospital for his broviac surgery. His broviac line will be removed and replaced with a port-a-cath. Lewis requires this direct IV access as he is very difficult to cannulate and requires IV medications in an extreme emergency situation (if he needs IV medications, it has to be immediately).

We have had a couple of practice trips for Lewis’ Pilgrimage and we are getting ready for our first proper trip to Taunton in Somerset next month. Then in December we will be heading to Southampton to meet some Post Pals friends! Very exciting indeed!

Lewis has received some lovely post this month and we feel very privileged to have made such amazing friends.

Update 29th August 2014

Since we received Lewis’ diagnosis of NCL on KTCD7, we have gone into overdrive fundraising to fulfil some wishes for Lewis. We cant go far with Lewis and we cant do much, so we are planning a trip around the UK to visit his Post Pal friends! The fundraising has been a huge success and we will be starting our visits next month if all goes to plan! We look forward to meeting as many Post Pals people as we can. Lewis wasn’t well enough to come to the Post Pals Party, but we have taken lots of precautions and plan to travel in a special vehicle which is extra comfortable for Lewis, with lots of supplies!

Lewis has received such lovely post this past couple of months. As usual we have taken photographs and put them all on his facebook page. Lewis always loves receiving post, and he recognises the Lewis J on the letters and postcards and parcels!!

There is no plan to take Lewis back to school as he is too poorly and because the time we have left with him is very limited, so we are going to try and make as many memories as we can while we can.

Post Pals has been amazing for us. I remember the first post we received – two huge parcels from the Post Pals Christmas Elves! We haven’t looked back – the friends we have made, the amazing children we have learned about, and the family we have got that we didn’t have all those years ago. Our Post Pals family.

Update 9th July 2014

Yesterday we finally received a diagnosis for Lewis’ condition and that he has defective gene KCT07 which he got from mummy and daddy. It’s incredibly rare for two people to have the same gene problem and meet and have a child. The diagnosis came from the second stage of the DDD study which is a study where the DNA is micro-analysed and this takes several years as you can imagine.

At the moment we are simply in shock.

The condition is progressive and degenerative with no cure, treatment or recovery. It is a distant cousin of Batten Disease which will explain why this kept cropping up in connection with Lewis’ deterioration.

Very little is known about the condition as it is so rare.

We hope (as always with the help of amazing Post Pals buddies) to give Lewis happiness every single day that we are luckily enough to have him with us.

He also had a recent scoliosis appointment and his curve is 100 degrees plus and therefore inoperable.

Our beautiful little boy still manages to smile despite being in constant and considerable pain.

Update 12th May 2014

Hello everybody. Thank you all for the lovely post Lewis has received from Post Pals. We continue to post photos and thank you comments on Lewis’ facebook page and we hope you get to see them. I keep putting particular pieces of post aside to respond to personally by post, and the pile is getting larger all the time! I promise I will get organised!

This past week I have just been able to start caring for Lewis by myself which is a major achievement for me after 5 months of feeling terrified of the responsibility. Lewis has been so smiley and happy and he really is enjoying life at the moment. He is loving watching his DVDs in his new sensory room, having his books read to him, and listening to music. He loves his Post Pals post, especially the post cards which we are going to use to decorate the ceiling with in his sensory room so that when he is lying on the sensory carpet, he can look up at see all his post!

We really feel like we are getting organised here now. Lewis’ trampoline has been sunk into the ground so that he can now go on it easily as it is at ground level. We have had some decking put in the garden so he can sit out comfortably in his wheelchair, and we are also in the process of making a corner of the garden his very own sensory garden!

Lewis still remains undiagnosed but (everything crossed!) his seizures seem to be finally under control again. His shoulder and hip are still sore but we have agreed no surgery this year if we can help it. He also needs extensive spinal surgery for his scolio-kyphosis as well but all his doctors and we his parents agree that the best place for Lewis this year is at home, with no hospital! So we are trying very hard to achieve this!

This weekend we are taking an extra special trip to London to Hamleys for an extra special party for 60 children from all over the UK which is being hosted by the Strongbones Childrens Charity. We have got to dress up as pirates and princesses! We are hoping the trip will go smoothly – it is a practice run for the Post Pals summer party on 28th June as we hope to be able to come to that too!

Lots of love to everybody on Post Pals. Thank you so much for everything and we hope to keep bringing you positive and happy news.

Update 5th February 2014

Happy New Year everybody! Well we have managed to stay at home, although Lewis has had several hospital visits in an ambulance because since we came home from Sheffield Children’s Hospital, he’s had a lot of seizures. Lewis’s neurologist has now started him on a new anti epileptic medication called Phenytoin which is what they were using in hospital as a rescue medication. We hope this works as there isn’t much left to help with his seizures if this new medicine doesn’t work.

Lewis has been so much brighter and happier and we have been getting lots of smiles. He has even laughed, but we can’t hear his laughter sounds anymore because of his tracheostomy. He is gaining weight well – such a difference from the skin and bone he became last summer. He is getting used to his trachy now and his tummy and bowel seem to be settling down as well which is really great news as he has had problems since April 2013, just before his admission to hospital for that long 6 months.

Lewis has lots of care at the moment as it is difficult for me (mum) to cope with all his new requirements on my own. His carers have been absolutely amazing and almost part of the family, which is lucky since they are here 24 hours a day at the moment!

We still have no diagnosis for Lewis. The doctors now say Lewis has ‘undiagnosed neurological degeneration with epileptic type seizures and movement disorder’. We will continue to search for a diagnosis for Lewis, try and discover what turned him from a normal little 3 year old boy into a child who can’t move or speak or eat.

Lewis will be going back to school for a couple of hours in the next few weeks and then the plan is to re-integrate Lewis into school gradually after the Easter holidays. He is really excited about going back to school, but he gets very tired at the moment and all his new medical requirements have to be sorted before he can go back. He will go back to school with a one-to-one carer who is fully trained to care for him.

Lewis really needs hip and spine surgery this year but his doctors have agreed that he needs to have a good period of recovery after long hospital admission, so we are going to try and put it all off until next year if we can.

Lewis has loved receiving all his amazing Post Pals post while we were in Sheffield Children’s Hospital, and also since we have come home. He was thrilled with his amazing Elf gifts! Thank you! It has been difficult for me to thank everybody personally because I had a bit of a breakdown when we finally got home from hospital so I’ve not been well myself, but once I am back on track, I will try to thank everybody personally for the amazing support, gifts, cards, letters and love Lewis and I have received over the past months.

Update 26th November 2013

Lewis has been in HDU at Sheffield children’s hospital (after various trips back and forth to ICU) for over 5 months now. The Post Pals cards and letters and postcards he has received have been great for decorating his bed space.

Well, everything crossed, this coming Monday we will be packing everything away ready to finally leave hospital and go to Bluebell Wood Children’s Hospice until Friday when we will finally go home!

We are very excited but as Lewis has been this close to discharge on numerous occasions, we won’t celebrate until we are settled in and have definitely left HDU for good! Well, at least until next year!

Update 26th October 2013

I had my first tracheostomy change on Thursday. It needs changing every week. The tapes that hold it in place need changing every evening. At the moment it is quite a big hole in my neck but as it heals up the hole will get smaller. The skin on my face, which was getting very sore from the mask I was wearing, is now much better.

I am still having very powerful and uncomfortable spasms in my right shoulder which I have now had Botox for – hopefully this will start to work in the next few days.

My left hip has now become dislocated and will require surgery (I had the same surgery on my right hip last year).

I am on antibiotics for a UTI again so I will be having my kidneys checked at some point to make sure they are functioning ok.

Everybody who needs to be trained in how to care for me with my tracheostomy is coming in to learn all the new ways to care for me as I will now have to be cared for only by a person who has had tracheostomy training. Once everyone is happy and comfortable caring for me, I will be allowed to start going home and should be home properly before Christmas.

Mummy has planned an extra special Christmas for us to celebrate!

Update 24th October 2013

Lewis has now had his tracheostomy and we are learning how to care for him with this new thing.

He’s doing really well and is really bright and happy. He’s really loving his Post Pals post and we are decorating his bed space as much as we can to make it nice for him.

We hope to be able to go home before Christmas.

Update 14th October 2013

Today we had Lewis’ MDT meeting (all professionals involved in Lewis’ care) and we expected to be discussing being discharged at some point this week. Instead we will be here for another 4-6 weeks as Lewis will be having surgery early next week to give him a tracheotomy. This is necessary because attempts to wean Lewis off the NIV have failed and we really want to get Lewis out of hospital and back home.

A bit of a shock, very scary, but Lewis is a hero and we love him so very much.

Update 3rd October 2013

Lewis is still in critical care at Sheffield children’s hospital but is doing really well. We were due to go on home leave for 48 hours this week but Lewis has managed to get a chest infection and as he is now on non invasive ventilation for his weakened lungs (from prolonged and numerous intubations on ICU). So because he now also needs oxygen, he needs to stay in hospital until he has kicked this bug!

It’s been a very long slog in hospital and we are really looking forward to going home but better to be properly well before we take that big step.

Lewis has managed to get out to the park across the road before he got the infection, so he has seen a bit of the outside world! We miss our cats and fish!

As we have been in hospital all summer, we intend to make the most of the rest of the year so will be celebrating Halloween, bonfire night and Christmas in great style!

Thank you to everybody who has sent Lewis cards, postcards, letters and gifts. We really appreciate it all and do try to take photos and do thank yous on his Facebook page.

Update 31st August 2013

Lewis has now been in hospital for 10 weeks, most of them in ICU at sheffield children’s hospital. There have been a few problems. The first two were severe stomach problems combined with very low levels in his blood. The blood became the priority and so the choices were bone marrow aspiration to check function, or temporarily stopping Lewis’ anti epileptic medication as a side effect of this is decreased bone marrow function. Lewis has been on the same AED for 6 years, but they suggested the stomach problems may have triggered this new reaction.

Less than a week into reducing the AED, Lewis went into status epilepticus (constantly having seizures) so was intubated and transferred from Doncaster to Sheffield by the amazing Embrace transport team. While on ICU, we discovered what was causing Lewis’ stomach problems. When his PEG was replaced with a new one in 2010, his bowel had moved between his abdomen and stomach so the new PEG was inserted through the bowel and remained there for 3 years without anyone knowing. During this time, Lewis PEG sore was always very sore and infected and unbeknown to us, a tunnel was forming, connecting Lewis bowel and stomach together and his bowel had also become stuck to his abdomen wall.

Lewis had already lost a lot of weight (approximately a third of his body weight) through his recent stomach problems, and so it was agreed he was not strong enough for the major laparotomy surgery required so the surgeons decided to try the surgery laparoscopically (using cameras instead of a large incision). The surgery was successful – they unstuck the bowel from the abdomen, sealed up the infected peg site and put in a new peg. They decided to leave the tunnel and hope it healed itself. Unfortunately the tunnel has not healed so Lewis will be fed into his jejunum (entrance to intestines) for 3 months and when he is stronger, he will have the laparotomy to sew up the holes.

So that was sorted out, fits had calmed down, AED was re-started, and we were coming home. Then Lewis suffered a collapsed lung so went back into ICU.

Since then, Lewis has had problems with collapsed lungs and been intubated and vented several times. He has also gone into status epilepticus again after an antibiotic for a urine infection had a nasty side effect of dropping his AED levels to zero. That was 2 weeks ago.

On Tuesday, Lewis had his ventilator tube removed and he went on to non invasive ventilation (NIV) but only lasted half an hour before requiring re-intubating. Yesterday they tried again and he is now on NIV and doing ok although he has another urine infection and is on (different) antibiotics, but the infection is causing him to have a lot of fits so for now we are still in intensive care.

Lewis has been through so much and has been so immensely brave. He has loved getting post pals cards, letters, postcards and gifts and we have been decorating his bed space with them all. We have been overwhelmed by how loving and caring people have been.

We hope to be able to start talking about home again in the next 2-3 weeks if we don’t have any more setbacks.

Update 21st August 2013

Well it’s been a tough few days for mummy and daddy and I. My EEG on Monday showed I’m in non convulsive status which means I’m having fits all the time. I moved back into ICU to be ventilated and am now on very strong sedation. A couple of not very nice options have been discussed to try and control my seizures but at the moment we are hoping my anti epileptic drug (which has been recently introduced) will soon take effect and so no fiercer intervention will be required.

So at the moment I’m asleep most of the time. I’m still having breakthrough seizure type movements but only when I am awake so I’m in a dark and quiet room and everybody has to whisper!

Tomorrow I’m going to theatre to have a broviac line (which is a permanent-ish type of canular) and I’m also having my jej PEG replaced with a jej mickey button.

Update 30th July 20013

As Lewis seizures are not being controlled in critical care HDU ward, the decision has been made to increase the sedation to a level where Lewis will be unconscious. As this may in itself cause respiratory problems, we are moving back next door to critical care ICU ward. This is being done for 24-48 hours with a 24-36 hour post sedation recovery plan so the neurologists and medics can come up with a reason for the increased seizures (infection?) and a plan for their future control. Until then we are reading a fabulous book Lewis has received from Post Pals but I’m sorry I can’t remember exactly who it’s from as we are quite disorganised at the moment, but thank you! Whoever sent it! 

Update 29th July 2013

Lewis’ lung has started to reinflate and he is breathing by himself. He is in HDU due to seizures though.

Lewis has had so much Post Pals post (thank you!) but because he’s not stopped fitting, we haven’t had chance to do photos. But we will!!! In particular Lewis loved Grace’s jokes and Henry’s footprints, and Julie and Alexander’s book about Jake the pirate. Thank you to Harriet for the beautiful pillowcase and Clare and Jessie for the bunting. So many more cards and gifts and we will get to them when things are a little less tense!

Update 27th July 2013

Yesterday Lewis was moved back to PICU. He has made it through the night, though his left lung is still partly collapsed. Physio came last night and loosened the gunk inside the lung which is stopping it being fully inflated. He is having physio again this morning to clear more. Lewis is sedated and his breathing is being undertaken by a ventilator but he’s doing better than last night and they hope to X-ray again this morning and show his left side is doing better and may be partly inflated now. Keep strong for him everybody, he’s fighting back and won’t let this get to him. Our brave soldier.

Update 19th July 2013

Lewis has woken up today. During an X-ray and CT scan of his abdomen this afternoon they discovered a problem with his PEG and he will require surgery early next week. This is in addition to his other problems. He is doing well now off the ventilator but is needing suction and oxygen often.

Update 17th July 2013

Lewis is in Sheffield PICU after spending three weeks in Doncaster Children’s Hospital. The doctors couldn’t discover what was wrong with him (he’s been having severe stomach problems for 8 weeks now) and during this time his blood levels have dropped very low so he was admitted. The doctors decided that either Lewis’ already undiagnosed degenerative condition had worsened and was now affecting his internal organs or that he was having an adverse reaction to his anti epileptic medication and so they decided to stop his medication and see if the bloods dropped.

Yesterday he fitted constantly and so after following usual hospital protocol, Lewis was intubated and sedated and transferred to Sheffield PICU. He hasn’t woken up yet but we are hoping he will soon. He is being very well looked after and Mummy and Daddy (and big bro Samuel) are taking turns staying at his bedside for when he wakes up.

Update 1st June 2013

Lewis is currently in hospital with an unexplained abdominal problem. He started with a poorly tummy last week and has since got increasingly worse and is now being closely monitored as his condition is deteriorating. We were hoping he was on the mend yesterday but today he’s a lot worse and will be in hospital for a little while longer.

Update 5th May 2013

Well Lewis has been on new medication for his overnight screaming, since we discovered they are a new type of seizure. It has taken almost 18 months for this to be sorted out – 18 months of him not sleeping, screaming for hours every night, being exhausted all day. Finally the doctors agreed to an overnight EEG and so now we are trying a new anti seizure drug. So far so good but it is difficult trying to get the balance right… too much and he’s too sleepy in the daytime, not enough and the screaming comes back. We have an appointment with the neurologist later this month to discuss long term treatment, and another overnight EEG is booked for June.

Lewis has been enjoying school a lot more now he’s not tired all the time, he’s much more chatty and bright during the day, and he’s sleeping so much better – we aren’t used to all this sleep!

We went to see Lewis’ private doctor in London in April and as a result some new tests have been done and we are trying some new foods and supplements. Every little thing helps. We will not give up searching for some answers for Lewis as long as the doctors are unable to give us any idea why he got ill and is now like he is.

This weekend Lewis and I went to visit his big brother Samuel at university for the day. Samuel is doing really well and we are so proud of him. He will be 20 next week so he really is Lewis’ BIG bro!

We are looking forward to spending a lot more time outdoors now the weather is getting nicer. Lewis has enjoyed watching me tidying the garden and helping out a little bit in his own special way. Lewis is very sensitive to the sun so he can’t go out in it without lots of sun cream or he gets very sore indeed so it is usually only for a short time, or we spend a lot of time in the shade. But Lewis does love to be outdoors, and we play with bubbles and other messy things, lots of which he receives from his lovely friends at Post Pals.

Update 7th April 2013

What a busy couple of months! Lots and lots of appointments to try and discover why Lewis has been unable to sleep, including a 24 hour overnight EEG which tested Lewis’ brain activity during sleep so we could see what was happening to make him wake up screaming several times a night. Well it turns out Lewis is having a new kind of epileptic seizure and he is having a lot more than we were even noticing. The doctors think he was probably having only 30-90 minutes of decent sleep per night. No wonder he was so tired and unhappy. Well we are really pleased to say that so far (everything crossed!) the new medicine Lewis is trying has helped to control these new seizures and he’s having a lot less so he’s getting a lot more sleep and is getting back to his usual smiley, chatty, happy self with his big beaming smile!

Lewis has had a lovely Easter holiday so far, spending time with family and friends and receiving lots of Post Pals post which he continues to love! Looking forward to some sunshine so we can get outside in the garden a bit more as we are all very fed up with snow now!

Update 3rd February 2013

What a busy month January has been! Lewis has had real problems sleeping. He’s been having sporadic sleep issues for around 14 months but this January he has been struggling to sleep at night at all, and so has been very sleepy during the day and not happy at all. We have spoken to his medical team about this before, but as it has escalated quite alarmingly this month, we have asked for an emergency appointment to discuss some kind of sleep study to see if we can get to the bottom of the unexplained screaming out in the night, often for several hours at a time.

Lewis has received some wonderful post this month, cards and postcards and letters and some great DVDs. He absolutely adores watching films as this is really one of the only activities, alongside reading, that he can participate actively in. Watching and listening are his only abilities. He enjoyed watching Mummy trying to drink milk through the crazy straws he received from Post Pals recently! And he did laugh whilst watching Open Season 1, 2 and 3 which were also from one of his Post Pal friends, Grace.

So it has been a tough month with little sleep and not many smiles, and we didn’t even get to make a snowman as it was far too cold to go outside! But we enjoyed looking at everyone else’s on the internet!

We are looking forward to some finer weather soon and also Lewis’ birthday is later this month, can’t believe he will be 9! It is always difficult at birthdays because we are another year further into him being ill, and another year with no idea why he is ill like he is, no explanation, no cause, and no hope of a diagnosis, but we try not to give up as one day someone might be able to help Lewis to get better.

Lewis’ scars are healing well after his hip surgery. We need to speak to the surgeon about it though because he is getting a sore patch of skin from pressure which was not there before the surgery. In fact, when he is sat on my knee, his bone is very hard and digs in so it must be very uncomfortable for him too.

We will keep trying to make Lewis’ life as happy and comfortable as possible, and we have to say that having so many Post Pals friends has been an absolute life saver for us and for Lewis. Knowing people care and want to take the time to write a little note or send a card or a gift to our gorgeous little boy, it is just wonderful. And Lewis ADORES receiving Post Pals post! It is the first thing we do when he gets in from school, before anything else!

Happy February everybody! Love from Lewis and family x

Update 4th January 2013

Happy New Year everybody! Lewis had a split Christmas this year as he spent it with Daddy, so he will be having a second Christmas at home with me and his big brother Samuel at the weekend, so thank you to all the Post Pals who sent Lewis Christmas gifts, especially his two elves – we will be taking photos and doing proper thank yous once he’s opened all his gifts. Lewis also received lots of lovely Christmas cards, and almost a full set from the reindeers! The Reindeer cards were wonderful and Lewis really enjoyed listening to their antics in the letters they wrote him.

Lewis has been out of his horrible plaster for several weeks now and is coping a lot better. His scars are healing nicely and his hip position seems to be good, although the surgery and the plaster for 9 weeks has caused his scoliosis to get a lot worse. We have an appointment with the consultant next week to see how bad it has got. It is giving him a lot of pain at bedtime, being laid flat, so we will need to talk to the consultant about this too as Lewis is not sleeping well at night anyway, and this is making it worse for him.

Lewis’ results came back from the micro-array study which took almost a year to carry out. Scientists looked very closely at his DNA to check for any abnormalities – it takes so long as the DNA is very tiny and there is a lot of it! The results were that there were no abnormalities at all, so they are now putting Lewis’ DNA into a further study which will take slightly longer which then micro micro analyses Lewis’ DNA to see if they can find anything that way. Other than that, there are no new tests on the horizon and so we still have no idea what made Lewis ill, or what continues to keep him ill.

On a positive note, Lewis is really enjoying life at present, and is often smiling and happy, and occasionally will laugh at his favourite films or TV programmes.  At the moment he is loving Open Season 2 and Open Season 3 and Happy Feet 2, but his favourite favourite at the moment is RIO which we have in 3D so its extra special for him to watch!

Lewis does love to receive post from Post Pals and we do keep everything that is sent. A lot of his pictures and cards are on display in and around his room and the house and it is always an absolute joy to know that people from all over the world are thinking and care about our gorgeous Lew Lew, so thank you very much indeed.

Update 27th November 2012

Hello and thank you everybody for Lewis’ wonderful postcards, cards, letters and gifts over the past couple of months.

Lewis is now out of plaster and finding it very strange after 9 weeks of being laid almost flat on his back with his legs sticking out to the sides! He is quite skinny and a bit spotty so lots of massage and cream is needed. Its also very uncomfortable for him and he has two rather long wounds, but they are healing very nicely. He is still in a lot of pain when moved, but is settled now when in a good position and is enjoying being back at school half days at the moment. He has loved receiving his cards and letters and gifts from Post Pals and we treasure them all! Everything is kept!

So now we are just waiting for Christmas and for big brother Samuel to come home from university for a few weeks to visit us. We would like a rest from hospital until next year so Lewis’ next appointment is at the scoliosis clinic in January. Having his hips in plaster has not helped his scoliosis at all and we are very worried that it has worsened quite considerably, but we will find out soon enough, so will try to put it out of our mind for now.

Since Lewis has been improving after his pelvis/hip surgery, he has been quite ‘chatty’ which has been lovely and we’ve had quite a few smiles, especially when reading letters and books or watching DVDs from Post Pals. It is so lovely to receive post from over the seas, so lovely to know that people very far away are thinking about our gorgeous Lew Lew, but also extra special to receive Post Pals post from people just around the corner! Thank you again! And we hope you have a wonderful Christmas – we will, as usual, do our best to make sure Lewis has the best Christmas he can!

Update 25th September 2012

Well its been a very stressful few weeks! The weeks leading up to Lewis’ hip surgery were worrying as it was all so scary and major, especially when we went for the pre-op appointment and found out just how major his surgery would be! But before then, he got to go to Blackpool for a week with Daddy and Granny and Grandad and he had lots of fun there!

So on 7th September we turned up at the hospital for Lewis’ operation and he was first down on the list to go to theatre. Four and a half hours later they paged us to say he was in recovery and we rushed up to see him. Since Lewis became disabled around the age of 3, his positioning has been a problem and he has developed quite severe scoliosis. This, alongside difficulty with supporting his upper body effectively, has caused his right hip to slowly come out of place and his pelvic bones have grown incorrectly because of this.  This meant that Lewis’ right hip was basically totally displaced and there was no simple way to put it back. So the surgeons decided to break Lewis’ pelvis, shorten his right thigh bone as this had also grown longer due to the hip being out, and to use a plate and screws to put his hip back into a better position. All this was done to hopefully help Lewis’ positioning and also to ease pain which it was starting to cause him.

When we saw Lewis, he had a canular into his neck (he doesn’t like giving up his veins to needles!) and was on oxygen, and had masses of blue plaster cast round his waist, down both legs, all the way to his toes. He will be in this until at least 22nd November when we will go back to hospital for an x-ray to see if the surgery has worked and that the thigh bone has re-set and the pelvis is safe.

Lewis was in hospital for 12 days after his surgery because he got a couple of infections requiring IV antibiotics, as well as needing a blood transfusion due to losing a lot of blood during surgery. It was quite worrying for the first week as Lewis was asleep most of the time, very pale and not very responsive, but as the blood transfusion kicked in, along with the antibiotics starting to take effect, he started to brighten up which was really great news and we were finally allowed to come home.

Now we are at home, Lewis is fighting off a tummy bug and a chest infection. It isn’t helped by the fact that his plaster is set in such a way that he is laid almost flat, and of course it is very difficult to move him about with his huge hip spica on. Even the OTs and physios on the ward were surprised about how large his plaster is! He only just fits through an average doorway! So Lewis is spending a lot of time watching TV and having stories read to him in bed! He has received a lovely parcel from Post Pals which made him smile, and some lovely Get Well cards and postcards too. He also received some lovely cards and gifts whilst in hospital and we put photos of these on his facebook page to share with everybody.

So now we are hoping Lewis’ general health will improve, that his surgery will be a success, and that after 22nd November he will be out of plaster and ready to go back to school as he is really missing all his friends!

Update 12th March 2012

Sorry it’s been so very long since the last update. I’m afraid the winter blues set in and the computer hasn’t got much attention at all. Lewis was ill most of November/December/January and is only just really starting to pick up. There was nothing specific that was wrong, but he was very unhappy and generally under the weather. We had several hospital visits to try and pinpoint the problem, and a few visits to the GP as well, as Lewis was unable to sleep at night, waking and crying for hours, with no apparent cause, and with no way to console him. So we’ve all been very very tired.

Everything crossed, things seem to be picking up and he’s becoming a lot brighter, and just this week starting to sleep through the night again, almost the whole night anyway!

Christmas was difficult as he was very ill on Christmas Day so although he had so many presents from Post Pals, he was too exhausted and unhappy to really open many and it really took it out of him when we managed to open a few, so we decided to open them with him gradually over the next few days. He got some wonderful cards and presents from Post Pals posties as well as an extra special card from each of Father Christmas’ reindeers!  These will now become annual Christmas decorations!

Lewis had to have some more bloods taken in January as the bloods sent off from Liverpool to test for Battens Disease were sent to the wrong lab so they couldn’t be done. The poor doctor at Sheffield who tried getting blood from Lew had a real struggle and after 1.5 hours only managed 3mls! He sent them off anyway and we got the results back a couple of weeks ago – negative! So here we are again at square one – no idea why Lewis is ill or what his diagnosis is! But it was great news to have it confirmed that he definitely does NOT have Battens Disease.

In February Lewis had his 8th Birthday! Again, he got lots of lovely cards and presents from Post Pals and as he was feeling MUCH better, he really enjoyed opening these and still has many of them up in his bedroom. He has finally moved into his ‘new’ bedroom and we are fast getting used to it being much easier to manage, and Lewis LOVES having a TV on the wall! He’s also got all his reading books on shelves in his new room so its much easier to choose a bedtime story!

Now the weather is improving, we are trying to get out and about as much as possible as Lewis really loves the fresh air! Sadly, in the winter months, we tend to avoid people because of coughs and colds and bugs which Lewis picks up very quickly and which do tend to knock him back quite severely, so we love the warmer weather and being outdoors!

Thanks to Sian and Jamie for the wonderful gifts and cards and thank you to Teresa Murray for the lovely gifts and cards which always make us smile.

Update 16th November 2011

Well, Lewis did indeed have his brain biopsy in September this year, which was a very scary time for all of us as we had left it until the very last and had many many other tests done first that weren’t so invasive or risky. Of course to the neurosurgeons, its a daily thing, but for us it was major and to be honest I think if we’d known how huge the scar would be on Lewis’ head, we might have thought about it a bit more! But it was definitely necessary as we had run out of ideas and we are determined to continue to try and find out what has caused Lewis’ illness as we do believe the miracle might happen where he can get better. As long as he is completely undiagnosed, there is hope.

We did have a fright when Lewis came home after the surgery. We were in the car for 2.5 hours for the drive from Liverpool back to Doncaster, and when we arrived home we noticed that Lewis’ head had swelled up A LOT and was squishy down the side of his wound! We panicked, an ambulance was called, and we were rushed to hospital. Well… panic over… Alder Hey were telephoned and advised us that it was completely normal and would drain over a few days! Which it did, phew!

So after a few more days off to recover properly, Lewis was very very happy to go back to school. He had definitely missed all his friends and teachers, as he had been off school since July when the summer holidays started. So we then had the wait for any results of the biopsy. At the time, the surgeon did say they had noticed that the arachnid membrane which covers the brain just inside the skull was abnormal so that was giving them something to look at, as well as investigations of his actual brain tissue (both white and grey matter) and his brain fluids.

Apart from a bunch of seizures and a ‘Frankenstein’ head (just in time for Halloween!) Lewis has recovered really well and is back to his normal happy self. He still loves receiving post from his Post Pals friends, and was very very excited to receive a package of goodies all the way from Madagascar! He also had great fun with his Halloween package from Post Pals, and continues to enjoy hearing about Dottie the Dalmatian.

Yesterday we returned to Alder Hey for the results of Lewis’ biopsy and we really didn’t expect much. Lewis had his wound checked by the surgeon who was very happy with its healing, and he had an EEG as well, he wasn’t bothered about having his head covered in electrodes as Cbeebies was on the TV!

Our final appointment was with the neurologist and we are still in shock really from what she told us. They have noticed in Lewis’ brain cells some pigment which is highly suggestive of Late Infantile Batten Disease. Now you may remember Lewis was tested for this 5 years ago (almost to the day) and the results were negative. But as this particular pigment in the cells is such a big marker for this condition, they have taken bloods to send to Guys Hospital in London (where the UK specialist on Batten Disease is based) to check Lewis’ lymphocytes. Apparently this is a new and conclusive test and will give a definite result. Although Lewis does not display a lot of typical Batten symptoms, there is a lot about him that is typical. So we now have to wait 4 weeks to get the results of that. It’s going to be very difficult and we are all very very upset and we really had hoped never to hear that word again in relation to Lewis. However, we will hope and pray that like all the other tests, this one will also come back negative.

In the meantime, we shall continue to enjoy spending time with Lewis (perhaps a little bit more than usual if that’s possible!) and work very hard to make this Christmas very special for him.

Thank you, as always, to everyone who sends Lewis cards, letters, postcards, and gifts. He really does love to receive his post and we do keep everything.

Update 2nd August 2011

Lewis is enjoying the school holidays and being able to visit lots of fun places with his new friend Lucy who is doing some work experience caring for Lew before she goes back to university in September.

Lewis is still awaiting a further appointment at Alder Hey hospital in Liverpool to discuss his brain biopsy. We have heard from the consultant and are just waiting for the appointment letter to arrive – very scary!

Lewis’ antibiotic treatment has almost finished now after more than a year. He did at some point have some bacteria in his blood caused by a bite from an infected tick, but all that bacteria is now gone from his system so we are slowly reducing the antibiotics and will be stopping them completely soon. We hope that this will not cause Lewis to return to having severe chest infections again. We will see when the colder weather comes.

Lewis is now wearing glasses as he is very slightly short sighted. What we have found is that when watching TV, if he doesn’t wear his glasses, then his eyes water, so we make sure to remember now!

We have been using a new sleep system for about a month now and are hoping to see some great improvements soon in his spine and ribcage situation. At the moment he has severe scoliosis and a rotated ribcage causing one of his shoulders to ‘hump’ and his ribs on one side to stick out. He’s basically all twisty. But we are hoping that with the sleep system and with good overall positioning, we will be able to prevent or at least put off for a very long time any spinal surgery, and at the same time hopefully resolve his hip displacement problem too which has been caused by his twisty spine.

Lew’s general health (everything crossed as usual!) is good and he’s definitely enjoying the sunshine! People comment on his lovely colour, but I point out to them that it is only on the bits that show! He’s got a very white belly and back!

We have noticed that Lewis is very very smiley and happy most of the time nowadays, which we see has a really good sign. Also, his head control is continuing to improve, and he’s started making a lot more sounds, so we do make a massive effort to have ‘chats’ with him. Whilst life with Lewis is physically very hard work, and emotionally very difficult at times (with worrying about the future and his health), he is always an absolute joy to spend time with and we love him so much, and knowing that his Post Pals friends care about him too is just amazing.

Thank you to Post Pals and to everyone who sends Lewis post. He does love to receive it, we keep everything, and we keep extra special items out on display so we can look at them often.

Thank you to Sian and Jamie for the fantastic home-made photo book about their rabbit called Milo which has been made specifically for Lewis. Thank you to Holly for the crafty bits and the hand puppet making kit.

Update 14th June 2011

Lewis continues to do really well on his blended vegetables diet! So far he is having butternut squash, sweet potatoes and carrots! Apples next! All this is through his PEG (tube) as he cannot have any food/liquid in his mouth.

Lewis is growing very fast, lots of people comment on his long eyelashes, but now they are also commenting on his length even though he’s always in a wheelchair! He’s not been able to go in his stander recently as unfortunately he fell off his bed and broke his leg AGAIN! So he had a plaster cast on for three weeks but had that removed today.

Lewis has had lots of hospital appointments recently as we are trying to get lots of testing done to continue to try and find out what has made him ill. We have been invited to take part in a genetic study and we hope that this will give us some answers although it does take up to one year to carry out the testing so it will be a while before we hear anything.

Lewis is, as ever, very happy to be receiving post from Post Pals! He has received today two letters from schoolchildren in Switzerland! He loved having these read to him, and looking at the colourful stickers on the letters.

Unfortunately Lewis will not be able to come to the Post Pals party this year as he is unable to travel far anymore. We travel for important hospital appointments (in London and in Liverpool) but these distance appointments do take their toll and make him ill. Although we know he would love to see everyone at the Post Pals party, we also know that the distance travelling and the need to stay somewhere overnight would really upset his delicate constitution, resulting in increased fitting, and digestive shutdown, and no smiles which is always really sad!

Thank you so much as always to everybody who sends Lewis cards and letters and gifts. Lewis loves getting mail from Dottie and we always read the letters and show the postcards to Domino!

Update 13th April 2011

Lewis has been back to Alder Hey for the results of his MRI and they have come back normal as usual! He also had some bloods taken for various, very rare conditions, also all normal. We are now waiting to arrange either an angiogram and then a brain biopsy, or to just go straight in for the brain biopsy. We should hear from the hospital in the next few weeks about that.

We are also starting Lewis on a blenderised diet, which basically means we will wean him off the formula milk he has through his PEG and he will instead have real, healthy nutritional food, through his PEG which has been blended to a liquid consistency. It’s quite daunting but will definitely be worth it for the health benefits!

Lewis also had another test for Lyme Disease which has also come back as negative which suggests that either his original positive test was a false-positive, or that the long-term use of antibiotics has eradicated the disease from his system. Whichever, the doctors have advised that we now start to reduce Lewis’ antibiotic intake which is good, but also a bit scary as he has been on them for such a long time!

Lewis has lost both his top front teeth and his new ones are growing through, but there isn’t enough room! So we are waiting for a dental appointment to see what can be sorted out so he doesn’t end up all crooked!

Lewis continues to be a super smiley and happy young man who is always wanting to see what the postman has brought for us! He loves it when the post has his name on so thank you to all the fabulous Post Pals out there who send Lewis postcards, letters, cards and gifts! I cant remember if I thanked one particular Post Pal last month but massive THANK YOU to Sian and Jamie (who have been sending post to Lewis for 3+ years now) for the donation to Lewis’ Fund!

Looking forward to the summer now so we can spend lots of time in the garden with the cats and the chickens!

Update 2nd March 2011

February was Lewis’ birthday month and what a busy month it has been!! He’s had ALOT of hospital appointments as the doctor in Liverpool (Alder Hey) was true to her word and is trying lots of new things to see if we can find a diagnosis finally for Lewis. So we’ve been flitting between Doncaster hospital, Sheffield Children’s hospital, and Alder Hey hospital in Liverpool.

Since our horrible appointment at the scoliosis clinic we’ve seen some improvements already in Lewis’ posture as we’ve starting to be much more focussed on his positioning in his seat, in bed, and with his new Charleywrap from New Zealand. We are determined to prove to the doctor we saw who said ‘nothing can be done, just wait until it gets so bad he needs surgery’ that positioning and posture management can and will help to maintain Lewis’ spine and extend the time he has before surgery does become necessary.

On 22nd February Lewis had an appointment with a specialist optician who prescribed him with glasses for very mild short sightedness so that’s a trip for the weekend to get some glasses! On 23rd February Lewis had his general anaesthetic at Alder Hey for his MRI, blood tests and lumbar puncture. Unfortunately they couldn’t get the needle in the correct position for the lumbar puncture so we’ll have to go back again for this another time. We will get the results from the other tests over the next few weeks. The list of things being tested for is quite long but is on Lewis’ facebook page. On 24th February Lewis had his check up at Doncaster about his broken (but not fixed) leg and the x-ray showed that all was fine so that’s a relief!

On a sad note, Lewis’ kitten (Tig) who would be a year old on 17th March has gone missing. Tig was definitely Lewis’ kitten out of all our cats as he would always sit with Lewis, whether in his chair or on his bed, and they had a special bond. Tig has been missing since 11th February. Yesterday we gave in and went to the RSPCA to get a new cat who is 4 years old and is called Mannie and has settled in already!!

The end of February was of course Lewis’ 7th Birthday! He received lots of cards from Post Pals which I saved for his big day. Unfortunately, on his actual birthday, he was ill in the morning so missed out on spending his birthday at school, but Mummy and Granny made up for that at home! In the afternoon he had a small tea party with TWO birthday cakes, some singing and dancing and lots of fun! Thank you very much to all the Post Pals who sent Lewis a card, and thank you also for the gifts he received, especially his Disney DVD! He has received some fantastic hand made cards and we do keep them ALL! We are running out of space to display them in Lewis’ small bedroom but when he moves room after the adaptations have been done (hoist, special bath, etc) we will have more room and will have a ‘Post Pals Wall’ like we used to have before we moved house in 2008.

Update 1st February 2011

Lewis received lots of cards and letters and gifts in December from his Post Pal friends and Elves, but as he was spending Christmas with his Dad, we saved them until he came home on 3rd January when Lewis had his second Christmas!!! He loved opening his gifts so thank you everybody who sent Lewis a gift or a card or a letter… he really enjoyed opening them and we are making good use of everything he received! In January Lewis received a scrapbook kit from Post Pals which we will be filling up over the next month or two!

Lewis has, fingers crossed, been well most of the time apart from un-explained temperatures which is usual for this time of year. We’ve managed to keep at bay any chest infections so far and are hopeful we can survive this winter without a hospital visit (please don’t let that be famous last words!).

Lewis is seeing a new doctor now at the Alder Hey Hospital in Liverpool. As a result of seeing this new doctor, Lewis is now in the process of undergoing several new tests. He’s already had a very detailed eye examination involving having sensors on his head and face, and looking at flashing lights and a computer screen with moving squares. It made my eyes go funny as Lew was sat on my lap for the 30 minute test! Lewis will be going under anaesthetic again at the end of this month for another MRI (a very detailed extra powerful one) and at the same time will have extensive bloods taken for more tests as well as a lumbar puncture for more testing of his spinal fluid and DNA. The doctor in Liverpool is VERY hopeful that she can find some answer for Lewis. She said that because Lewis was completely fine until he was past his second birthday (i.e. was not born with a condition) it should be possible to discover what caused him to become ill and (we wish and hope and pray!) to find some way of making Lewis better! There is talk of a brain biopsy if the MRI scan shows anything that needs further investigation and we have discussed this and will agree to this surgery if we believe it could lead to some improvement with Lewis’ condition.

Lewis continues to be his happy and bubbly self and we are seeing very tiny improvements in him, which although they are really tiny, are so amazing for us to see! He is getting brilliant at being able to move his head about for a short while, lifting it off his chest when it falls forward, turning his head to look to either side of him – amazing! And he smiles most of the time now which is really fun especially because he has lost one of his top front teeth so I call him Gummy Bear sometimes! In the past couple of weeks we’ve even experienced Lewis’ laughter once or twice which really is magical!

The best thing (I think) about the improvements in Lewis just recently is that other people who don’t know him well are starting to see him! Usually, people will see Lewis in his wheelchair and assume he has cerebral palsy and is not mentally responsive either. But with his exceptional eye tracking and responsive facial expressions, people are now seeing the Lewis inside who understands and wants to interact with people! He may not be able to move his body but his brain, his personality, is very intact!

So lots of hope for us here at the moment and everything crossed!

Update 15th December 2010

As usual it’s very busy here!! Lewis is stable which is great for this time of year – often we would be in and out of hospital but FINGERS CROSSED he’s doing okay! He has however been to hospital quite a lot for appointments. As you know, he broke his leg in October so had to have a lot of time off school as it was very difficult to transport/manual handle him. He had his plaster off in mid-November and is now plaster-free, hooray! He has had some intensive physio to try and sort out any niggles and is doing a lot better!

We have an appointment in January to see the orthopaedic team about his hip placement and his spine (scoliosis) but in the meantime we found out about a family in New Zealand who have made their very own version of a back/spine brace which is much friendlier than the NHS versions available here. We have put our order in to get one and hope to receive it early next year – we have had approval from Lewis’ physios to try this.

Lewis was very very happy to be back at school but then the snow arrived!! We could not leave the house for three whole days because of the extent of the snow (18 inches in some parts of our garden and drive and even out on the road!). School was closed for a little bit longer because of the ice, but thankfully Lew is now back at school and this week he was a shepherd in his nativity. He loved it! The photographs are on his facebook page for everyone to see.

Today we had a very exciting appointment at the Alder Hey hospital in Liverpool. Lewis saw a paediatric neurologist we had been recommended and she was fantastic! She was so positive and really confident about new tests and really getting to the bottom of why Lewis is ill. She feels that it is just a matter of finding the right tests so that we can finally get some answers and she’s determined to get us there if she can! So Lewis will be having another (super duper very high powered) MRI in the next couple of months which will show up any changes in his brain that might not have been picked up before. She also wants to take some more bloods to test for other conditions, particularly metabolic illnesses, as well as doing a further lumbar puncture to test the DNA from his spinal fluid for various illnesses she has in mind. She has also spoken to the neurosurgeons at Alder Hey about the possibility of a brain biopsy for Lewis – now this is very scary for all of us, but the place in the brain they want to take the biopsy from is a very easy part to get to (for a brain surgeon!!) so once Lewis has had the MRI, we will decide whether or not to go ahead with this – the reason for doing this would be that the results might lead us towards a treatment programme that could see some real improvements in Lewis’ condition and that is something we would love to see and what we are always hoping for, so we are definitely leaning towards having this done.

Lewis is very excited about Christmas, we have the tree up and the decorations and lights are sparkling all over the house! Lewis will be going to spend Christmas with his Daddy and grandparents on Christmas Eve but will be back home with Mummy just after the New Year for a second Christmas with Mummy, Shane and big brother Samuel. Thank you everybody who has sent Lewis Christmas cards, thank you to the reindeers (4 so far!) for sending Lewis letters about what is going on with Father Christmas and his preparations for the big day, and thank you to pals who have sent Lewis Christmas gifts!

A wonderful December to everybody and let us hope that for us and all other children in need of answers that 2011 is the year we get our wishes!

Update 12th October 2010

I can’t believe it has been three months since my last update! It’s been so very busy here!

Lewis is growing very fast, is becoming very tall and heavy, spending lots of time in his stander at home and continuing to practice holding his head up! Unfortunately, because he is getting so heavy, I did slip and drop him while trying to lift him off the bed about a week ago, and so we had to go to A&E to get an X-ray on Lewis’ foot to check it wasn’t broken! Luckily, it was just badly sprained, but it is hurting Lew and so he has been off school for a week, but we hope he’ll be happy enough to return on Monday.

Lewis will be changing bedroom soon (hopefully by Christmas!) as we live in a private rented bungalow and our landlord has just agreed to a 5 year tenancy so we can get some adaptations done! Lewis is swapping bedrooms with his big brother Samuel so that he can have his bath and bed and other equipment all in one room complete with ceiling tracks and a hoist! So that is exciting! Luckily, all the items Lewis received from a charity via Post Pals for his ‘In The Night Garden’ room makeover can be moved to his new room once it is finished! We are also hoping to get accepted by a charity that does ‘sensory gardens’ as Lewis loves being outdoors and we know he would love his own little sensory garden at home.

Lewis got his Lyme Disease test results back from the hospital in America and again they were negative so it is now time for us to put that behind us and look to other reasons why Lewis became ill when he was 2 years old. We continue to hope that we will find a cure for him and that one day he will be able to walk and talk and eat again.

Lewis has received lots of lovely post from Post Pals and I always try to take photos and put these on his facebook page and tag in Post Pals so everybody can see him! Most recently he got a very cool smiley face wrist band (bracelets are for girls!) which he was very happy to wear and it looked very cool as it matched the t-shirt he had on!! Lewis is looking forward to Halloween and we will be hollowing out a pumpkin to make a Jack O Lantern and will hope for some trick or treaters to visit (but only for treats please!). Lewis loves to meet people, especially other children, so children in fancy dress is the ultimate enjoyment for him!

Lewis now has just two kittens (Patrick and Tigger) who are huge and they love to sit with him on his chair or bed and keep him company. Unfortunately, April died in the summer, and we were so sad but then we heard about another little kitten who had nowhere to live and as she was a little girl, we couldn’t resist, so now we have Aoife too and although she is tiny, she thinks she is as big as the boys (who are 4 months older than her!) and they have such fun together. Aoife’s favourite place to sleep is with Lewis and he loves her – she always makes him smile!

Lewis has another ‘pet’ now too… Domino the Dalmatian! Domino was sent to Lewis by Post Pals and we receive regular updates from Domino’s family who have all gone to live with the Post Pals children!

Things in the future for Lewis are a microarray analysis – this is very intensive testing of Lewis’ DNA which takes around 9 months to complete (all it takes from Lew is some blood I believe). The waiting list for the testing is around 2 years, but the results so far for children who have had the test have been positive – several children with totally undiagnosed conditions have finally been given a diagnosis. If we can get a diagnosis for Lewis’ condition, we can then look at a cure or if not at least have an answer. We are also awaiting an appointment for a SPECT scan which I think is like an MRI scan except its a video rather than a photo… so it shows where signals/blood/fluid, etc are going in the brain. That might give us some answers too! We are always looking in new directions to try and find some help for Lewis and are always open to suggestions – a lot of tests Lew has had have been as a result of people suggesting doctors/conditions because who knows? One day we might find the right one!

I’ll try not to leave Lewis’ update so long until next time! Apparently as I type, it is 77 days until Christmas! Help! Thanks again to everybody for taking time to contact Lewis, to send emails, postcards, letters, cards and gifts! Lewis always recognises his Post Pals post and always has a huge smile!

Update 29th June 2010

Not much to update. Lewis is still doing well on his antibiotics and we are hoping to get another MRI scan done soon to see if there have been any more changes to Lewis’ brain.

Lewis went into hospital for day surgery recently to have his PEG (stomach feeding tube) changed into a button (easier, more compact). Unfortunately, Lewis has grown so much since he had the original PEG put in three years ago, that it wasn’t possible to give him a ‘button’ – the hole in his stomach and the hole in his skin had grown too far apart!! So he’s got a sparkly new tube for now and we hope to try again with the button in a few months!

Lewis is going to a hospital near London next month to have some bloods taken for some specialist tests to be done at a Lab in America so we will hope to get something useful from them.

Lewis’ kittens are growing fast although he only has three now. Sadly, we lost one of them to a car accident. We are all very sad, but the two brothers and sister left behind have become super affectionate which Lewis absolutely loves!

Lewis recently spent the weekend at his Daddy’s house as his aunty and cousins were visiting from Australia. It has been almost a year since he last saw them so he had a great time catching up with the family and having his cousins sing and do shows for him – I believe the videos are on Lewis’ facebook page for all to enjoy!

Thank you to everybody for the emails, the letters, and the postcards Lewis has received. I am sorry that sometimes there is quite a delay in responding to them – sometimes it really can get super busy here!

Best wishes to you all from all of us until next month!

Update 26th April 2010

We have been brave this month and re-started Lewis on his antibiotic therapeutic treatment to see if we can re-gain the improvements we saw in him last year (i.e. holding his head up for prolonged periods of time and trying to speak and reach for things). Since we stopped the treatment in December (due to increased seizures and hospitalisation) Lewis has lost his head control completely and doesn’t try to speak at all or seem to have any control over his reach which has been very sad, but we needed to sort out the seizures before they did some serious damage to his brain. Now the weather has started to improve, it seems like a good time to start over as Lewis is usually (fingers crossed!) very well in the spring/summer months and he looks great with a little bit of a tan!

Lewis’ cat Chelsea had her 4 kittens – Patrick, Blondie, Tig and April! They are such characters and now they are almost six weeks old Lewis loves to watch them playing around and they are very happy to climb all over him and keep him entertained!

Lewis’ neuro-physiotherapy with Anna is also going really well and we really do feel that Lewis is benefitting from the weekly sessions. Now that Lewis is back on his antibiotics, we might even see some bigger improvements than before!!

Lewis’ big brother Samuel will be 17 next month – very scary how fast time goes by!

Lewis has received so much post this past month from Post Pals, he’s had something in the post almost every day! I have put photographs on his Facebook page of Lewis with his post so if you have sent him something, please do take a look at Lewis’ photo albums or visit his website!

That’s it from us for now – its so very busy here, sometimes I just don’t know where to start! Love to all of Lewis’ friends until next time!

Update 3rd March 2010

February was Lewis’ 6th birthday month so it was definitely up and down. Part of me was very excited about my little boy being a year older, but another part of me was so scared and hurting because Lewis can’t do the things he could do before he got ill… the things a 6 year old should be doing… so I’ve had a few tearful episodes. As usual though, Lewis’ smiley face has cheered me up and Lewis’ older brother Samuel has helped me loads with hugs and heart to heart chats – for an almost 17 year old, he’s a top young man!

Lewis’ health has been up and down this month. He’s had a mild chest infection and a severe tummy bug and had lots of time off school and in bed watching DVDs! He had a brief visit to hospital for assessment and to get some antibiotics then it was straight back home again – we are trying not to stay in unless it really is very serious. Lewis is better off at home where we can care for him properly unless he needs very intense monitoring / treatment that only the hospital can provide.

As physiotherapy is inconsistent and patchy (I am guessing due to huge staffing issues?) here in Doncaster, we recently got in touch with a paediatric neurological physiotherapist to come and assess Lewis. The assessment went really well and Lewis’ Fund is going to pay for Anna to come once a week. Lewis had his first session yesterday and although it wore him out and he found it quite difficult, we know that it will help him hugely so we’re very excited about that. We are also waiting for Lewis’ new antibiotic prescriptions to arrive as we are re-commencing his intense antibiotic treatment programme now we have ascertained why his seizures increased massively in December (the antibiotic he was on for 6 months increased the levels of anti-epileptic medication in his liver – when we changed antibiotics at the beginning of December, the anti-epileptic levels effectively dropped, hence the increased fitting – Lewis’ medication has now been increased and he will be even more closely monitored this time around).

Lewis’ cat Chelsea is going to have kittens! She is huge and waddles a lot! Her kittens are due mid March so we’re very excited about that!

So on to Lewis’ birthday party – what a fantastic day Lewis had! He got so many wonderful gifts from friends, family and lots of Post Pals posties! There are photos on his website and also on his facebook page! Lewis had a Science Boffins party – James Boffin came to our house with his white coat and his experiments, and he performed stinky, messy, exciting, fun experiments for and with the children! It was a great entertainment and we will definitely be meeting up with James Boffin again in the future for more science fun!

As usual, thank you Post Pals for your amazing work. Samuel asked me the other day how Post Pals started and who did all the work… I explained about Viks and how we had met at the Post Pals party last summer – I might even be able to get him to come along this year!

Update 4th February 2010

What a mad couple of months! As you may remember, Lewis was in hospital a lot of December due to his massively increased seizures. We took him off his antibiotics while we tried to work out why he was having so many seizures instead of the 2-3 a month – he was having a seizure every 5-7 minutes constantly – he was exhausted, we were exhausted – and we didn’t know what to do. Lewis came out of hospital on 24th December but was ill on Christmas Day. He did friends – thank you so much! A very special package Lewis received was from a class of students in Korea! Each student had hand-drawn Lewis a little Christmas card with a personal message. He loved to read these and to look at the drawings and I will take a photograph for Post Pals as the students heard about Lewis on the Post Pals website!

At the beginning of January Lewis had another cluster of seizures resulting in a visit to A&E at which time he had to be given so many drugs to control the seizures that he did actually stop breathing. It was the most terrifying moment of our lives, seeing Lewis lying there, unconscious, covered in wires and tubes, and then for him to go completely still. All the alarms went off and the crash team came running down the corridor into the room. I was just a screeching headless chicken, running in and out in a major panic and shouting at Lew to stop being silly (funny the things you say when you panic!). Anyway, after a short while the team got him breathing again and he remained stable (but still unconscious) for several hours. The medicines did their job though and he has been seizure free until this past two days where he has had two single seizures – I am very very nervous about giving him any rescue medication after what happened last time, although I know the time will come when I will have to so let us hope he doesn’t need so much this time and that he recovers quickly from the next seizure cycle.

Since Lewis has been off his antibiotics, his head control and improved cognitive abilities have gone, so we are very sad about this and keen to re-start the antibiotics, but without the suspected side effect of increased seizures. It’s going to be a difficult time but we want the best for Lewis and of course we want him to get better. Hopefully one day we’ll be able to find out what is wrong with him and then find a cure – what a miracle!

We are now looking forward to Lewis’ 6th Birthday at the end of this month. Lewis is having a science boffin party – lots of fun, colourful, noisy experiments to watch! Lewis has grown a huge amount in the past couple of months and continues to grow out of all his equipment! We are hoping to apply to a charity to take Lewis to Walt Disney World in Florida later this year. We feel Lewis is now old enough to appreciate this and we hope he would be well enough to travel – the charity arranges specialist seating on the flights so this would be such a huge thrill for Lewis to enjoy – we’ll see and let you all know!

Lewis continues to receive letters, postcards and gifts from Post Pals friends and he is always very excited to see his name on the front of envelopes! As December and January have been so very busy and stressful, I haven’t had much chance to update Lewis’ website with photos of him with his Post Pals post, but I will be doing this shortly.

Lewis continues to enjoy school and is doing well on his eye computer!

As ever, thank you Post Pals and friends for everything. What would we do without you?!

Update 4th December 2009

Lewis has been very poorly recently, having lots of seizures and therefore spending a lot of time in ambulances and in hospital. He is in hospital now as his seizures are not stopping at all and his usual rescue medication has not been able to stop them. Lewis is being tried on an extra strong anti-epileptic drug and if this doesn’t work then they may have to anaesthetise Lewis (like a drug induced coma) while they try to work out what is wrong.

We have put our Christmas decorations up at home but Lewis hasn’t been able to see them as he’s been in hospital since 1st December. He is being well looked after in hospital though and there are pretty lights up for him to see here.

Thank you very much to Post Pals for the postcards, cards and letters Lewis has received in November. He does have a couple of cards at home that have arrived from Post Pals which we haven’t opened yet – if he is in hospital for much longer we will bring them in here and decorate his room with them!

Update 2nd November 2009

It has been very busy here since our last update. Lewis has been on his antibiotic treatment for suspected Lyme Disease (although this still hasn’t been confirmed) and we are awaiting further tests. Lewis is due to have nerve conduction therapy and a sleep deprivation EEG on 2nd December. We are also still awaiting detailed feedback on a recent MRI scan which showed changes to his brain. Lewis continues to grow and is becoming very tall and heavy! He’s definitely having a growth spurt! He has been managing really well (fingers crossed!) with his feeding programme and so this has helped his weight a lot and has also given him a bit more strength in his neck area so he can hold his head up for a few minutes at a time now if it is gently supported.

Lewis has received lots of post from Post Pals posties – he received a blanket, some garden lanterns which we will try setting off on 5th November, he received some lovely books and a glove puppet elephant, he received some very spooky Halloween cards and a Halloween candle! Thank you to everybody for his lovely postcards, cards and letters! Lewis loves to receive post with his name on and does get very excited! We do try to remember to take photos of Lew with his post and I will get around to putting these photos on his website soon!

Lewis is loving school and enjoying baking (although of course he can’t eat what he bakes so Mummy and big brother have to help out there!). Our two cats have taken a shine to Lew, I think they realise now that he won’t pull their tails, so they like to spend time sat with him which he loves! He finds it especially funny when they jump on the side of the bath in the mornings! We also have two chickens which are now huge and Lewis finds these very amusing when they are running and flapping around the garden!

Lewis still loves In The Night Garden… his favourite episode is when the Tombliboos clean their teeth… so I have recorded this one for him to watch! He laughs out loud when watching this one which is great to hear and see! He is, as ever, a super happy young man who never fails to charm everybody he meets!

Thank you once again Post Pals for everything!

Update 3rd August 2009

Lewis’ health has been up and down this past month. He’s definitely showed some signs of improvement, so we are now wondering if it’s the antibiotics we are paying for him to have to treat the possible Lyme Disease, or if it is just the nice weather we’ve been having! Lewis is definitely more in control of lifting up his head and turning his head to look to either side which is pretty special! He’s been on the antibiotics for 3.5 weeks now and we hope to see further improvements in the next couple of months at which time we will decide whether or not to continue with the medication.

Lew has an MRI, lumbar puncture and blood tests under general anaesthetic booked for the end of this month, so that’s a bit scary given how badly he reacts to anaesthetic. It’s for a good reason though so fingers crossed we’ll get some good news from the results.

In the past month Lewis has been to Scarborough with Mummy, where he wasn’t very well with a 48 hour bug, and then to Blackpool with Daddy, Granny and Grandad where he had a great time.

Lewis’ kitten Chelsea entertains endlessly as do the 2 chickens we now have in our garden!

Thank you Karen Sami for the lovely cards that always cheer us up. Thank you to Sarah for Hugo Mouse who goes everywhere with Lew and also to Helen for the Winnie the Witch books and CDs!

Update 29th June 2009

It has been an immensely busy couple of months. After Lewis had blood tests sent away to a private lab in Germany in May, we were told that he had tested positive for Lyme Disease. This was amazing news as it might mean that Lewis could be cured in some way. Of course the first question was if Lewis was ill because of Lyme Disease or if it was just something else that he’s got but that is not causing his current undiagnosed condition. Since then we have hit a brick wall as far as treatment is concerned. There is so much controversy around Lyme Disease (even its existence is questioned by some) and so we are fighting now to get Lewis started on antibiotics because we feel that we must try. If the antibiotics don’t work, at least we can say we made this effort for Lew. And if they do work… it will be a miracle!

Lewis has been in hospital this month due to increased seizures and unexplained rashes. He is home now but definitely not 100%.

He has got a new kitten called Chelsea who loves him! She sleeps with him, climbs all over him, purrs at him, and makes him laugh and smile! Lewis is also a lot more ‘talkative’ (trying to vocalise) which is wonderful for us! He is so happy at the moment and it is always great when Lew is having his up periods as it helps us through the bad times when he is very ill and not our bubbly little man!

Thank you to Karen for the Iggle Piggle t-shirt and thank you to Sarah for the ‘book about me’ which Lewis loves! We are looking forward to the Post Pals party this weekend and hope to see some posties there!

Update 31st March 2009

Well Lewis is 5 years old now! We have had a busy time with him having tests for various conditions – always searching! He had the conclusive test for Lyme Disease and this did come back negative. We are still pursuing the possibility of 3 months IV antibiotics to see if there is any chance that the test was not correct (apparently this can happen with Lymes – it is a very elusive disease to pin down!). We also have on the horizon some new tests for Lewis. We are waiting for an appointment for nerve conduction testing – where small electric shocks are passed through Lewis’ nerves to see how fast (if at all) they travel from one place to another. Also, Lewis’ hospital is getting a new super MRI scanner in April and Lewis is on the waiting list to have a scan on this machine to see if it can pick up anything that his other regular MRIs have not. We are also hoping to see a brain specialist about the possibility of Lewis being suitable for deep brain stimulation surgery – so lots of things coming up. Lewis’ hip surgery has been cancelled. We were not happy to go ahead with the surgery once we realised how permanent it was (cutting his abductor and adductor muscles) given that there is a chance of recovery – as long as we have no diagnosis at all, then there is always hope. With Lewis, he has absolutely no diagnosis, not even some vague idea. The medical profession is totally confused by him which is good in a way as it means he is quite high on the new tests list!

Thank you so much to pals for Lewis’ birthday cards and presents at the end of February. I put photographs on his website. Thank you for the lovely cushion he received from SOLAR (Stitches of Love and Kindness). Also, thank you to Post Pals for his teddy bear! Thank you to pals who send Lewis and Samuel regular postcards and letters! We even found a letter that had got ‘lost’ in the house move at the beginning of February from Post Pal Leona so that was a lovely surprise! We have now moved house completely and the bungalow we are in is fantastic! We are just renting so we hope the landlords decide to let us rent it for a long time as we are very happy here!

Lewis has a new carer, Rachel, whom he adores! She is young and pretty and blonde and he absolutely loves her! Samuel is doing really well at school and is approaching his exam time now before going up (fingers crossed!) to Sixth Form in September. He’s working really hard and making good grades!

Update 24th February 2009

Sorry for the long wait for an update! We have been very busy moving house! We are now in a fantastic bungalow which is absolutely perfect for Lewis and is huge so is perfect for me and Samuel too! We have a huge garden so Samuel has his trampoline back up and we now have telephone and internet and Sky too so everybody is happy!

We have postponed Lewis surgery – we got a date for end of March – as he has recently had tests for Lyme Disease. You may remember Lewis appeared in The Daily Mail in September 2008. From that article, we had 60+ messages from people suggesting Lyme Disease. A few things have added up (Lew was bitten by an insect in Southern France in September 2005 and started to get ill in December 2005) so The Lewis Jeynes Fund has paid for Lewis to have specialist tests for Lyme Disease and we are awaiting the results. If it did by some miracle turn out that Lew had Lyme, he could be almost completely cured! So having surgery which is irreversible (cutting muscles) is not an option until we are absolutely sure we are ready for that step. We saw the specialist (Dr Daymond) at Nuffield Hospital in Newcastle on 9th February and the results should be back from the tests in 3-4 weeks. Fingers crossed!

Dr Daymond has also suggested that Lewis see a brain specialist in London so we are hoping for an appointment with him soon too.

It’s Lewis’ 5th Birthday on Saturday! Wow it has come around fast! It’s a happy time because we didn’t expect him to see his 3rd Birthday, but it is also sad because it means he has been ill for 3 years.

Samuel is doing really really well at school – preparing for his exams! He is doing lots of extra revision lessons and he is feeling really confident so that is great!

And Spring is on the way so we’re all feeling great!

Thank you so much to Post Pals for the lovely postcards, cards and letters we have received. Lewis got some valentine cards too – the only ones in this house!! We got two amazing postcards as well – made from material. They have pride of place on display for everybody to see!

Update 11th December 2008

We had a hospital appointment today and I thought it was just a routine one so was totally unprepared. Lewis is going to have to have surgery on his right hip due to the problems with his positioning. He has slight dysplasia and if it continues and is not dealt with now, his hip socket will erode and it will not be fixable. So he has to have something done to the soft tissue around his hip joint (not completely sure what – got an appointment in the New Year to go over details) and he will be in braces and plaster for 6-8 weeks. If this doesn’t work, he will have to have something done to the actual hip joint bone so it was quite a shock.

Other than that, he’s been great and he loves getting all his Post Pals letters, cards and presents!

Update 25th November 2008

Lewis is not very well (lots of seizures, twitching and temp spikes) so we’re going into the Bluebell Wood Children’s Hospice this afternoon for a few days.

A HUGE thank you to Love Quilts UK for Lewis’ wonderful ‘transport’ quilt which we received yesterday.

Update 7th November 2008

Sorry for the delay in an update. We haven’t had access to the internet until just this week!

In August I separated with Lewis’s dad, and so Lewis, Samuel and I have moved into a new home which isn’t very practical as it is a 3 storey town house with lots of stairs, but we will find somewhere more suitable early next year!

Lewis has been poorly a couple of times since we last did an update. In August he had a severe chest infection and suspected strep infection and was in hospital for a while. He eventually recovered but then got another chest infection in October and was in hospital again for a few days. He’s feeling a lot brighter now, although autumn and winter are the time for chest infections and children like Lew are much more vulnerable to these so it’s always a difficult time – lots of staying indoors and keeping warm!

Lewis has been enjoying learning more about his eye computer at school and we have been very lucky to borrow an eye computer for home for 3 months from a charity called Special Effect (www.specialeffect.org.uk). As Lewis learns how to use his eye computer more, he will eventually be able to communicate with us by eye pointing which will be amazing!

We do still have hope for some kind of miracle and that Lewis will one day get better and be able to walk and talk again, but there has been no breakthrough for Lew, even though we did get lots and lots of feedback from a lot of very kind people after Lewis appeared in an article in the Daily Mail in September. Lots of suggestions were made as to why Lewis is like he is, but sadly all the suggestions had already been explored, or once passed on to Lew’s medical team, were not conditions that were relevant to be looked at or further explored.

Thank you very much for Lewis’ and Samuel’s Halloween packages! They were a lovely surprise! We didn’t get to go out as it was way too cold and Lew had just got over a chest infection. Lew received two books, Crazy Cats which he loves to look at, and a great book about Christmas which has Lewis’ name in! We are saving that for December when we get all Christmassy at home! Lew’s favourite gift has got to be the Hoob he received! He loves it! Every time he sees it, he has a huge grin! And we now try to catch the TV programme now and then so that our Hoob can watch with us – thank you very much! Thank you for the great Halloween bags for Samuel and Lewis! They were a lovely surprise! We weren’t able to get out trick or treating because of Lew’s chest being vulnerable but Samuel got to go out with a friend and her children which he really enjoyed!

Update 4th June 2008

Not much has happened this month. Fingers crossed, Lewis has had a good month and so we’ve been quite steady and just got on with normal life day to day!

We have had some visitors over half term which was exciting but tiring for everybody and Samuel had a birthday (thank you so much to all the Post Pals for Samuel’s lovely cards and gifts!)

June and July are much more busy for us – me and Lew are going on a 3 part holiday this month – we are visiting our friend for the weekend, then going to butlins for the week, then visiting Declan K (Post Pal) for the next weekend – so lots and lots to do!

Thank you to all Lewis’ Post Pals for his cards, we love to receive them.

Lewis is looking forward to going back to school tomorrow after the half term holiday and then a training day on Monday.

He had an appointment with his surgeon and his PEG is absolutely fine and should last him another couple of years so that’s good news. We are feeling a bit like Lewis has been forgotten by the neurology department though, so we are going to be nagging them for some more tests, as it’s now 2 years since Lewis became ill and we still don’t know what is wrong so we want to see if anything has changed – so I think another MRI is on the cards!

 Update 24th March 2008

Thank you to Post Pals for all Lewis’ lovely Easter cards!Especially thank you to Kate W for your letter card, to Karen (Sami) for the lovely bunny card, to Julie Barrett for the funky bunny card, Kate Dee for the squidgy dinosaur card, and to Marie and Michael, and Martin Jackie and Jamie for their lovely surprise Easter cards.

The cards are on Lewis’ dayroom windowsill at the moment, but will go on his Post Pals wall in the playroom soon!

Update 3rd March 2008

Wow what a busy year it has been so far! February was super busy with appointments and visits and of course Lewis’ 4th Birthday! Lewis had the most wonderful day and he got so much post from Post Pals arriving from the first week of February. I kept it all hidden away until his birthday so he had a really big surprise! He was quite tired early on his birthday when we opened his cards and gifts but later on he brightened up and had a wonderful time at the local bowling alley with his friends. On Sunday we had his ‘proper’ party with an entertainer and his puppet called… LEWIS! It was great fun!

Health-wise, Lewis has been doing really well (fingers crossed!) and is absolutely loving school. After Easter he will go to school for 3 days and will also be going on the school bus which will be very exciting for him!

A big thank you to all Lewis’ Post Pals who have sent him so many cards, gifts, postcards and letters this month. You certainly have made his birthday very special and there are lots and lots of photos on Lewis’ website to prove it!

Update 3rd February 2008

We had a great Christmas although Lewis was ill in November and in December, particularly on Christmas Day and Boxing Day, but fingers crossed so far this year he has been doing really well! His PEG site was infected so he had to have antibiotics for that, and with the infection he did have increased seizures, but once the infection was gone, he was back to normal again.

The most exciting thing about January for us was that Lewis started school! He goes on a Monday and a Friday for around 5 hours and he absolutely loves it! It was very difficult at first to leave him, but its getting easier and he is already signed up to go an extra day from after Easter! He does baking on a Friday at school, and on a Monday he has communications sensory assessment so the school can assess his abilities and preferences and how to help him to communicate. We are so excited that one day soon Lewis might be able to communicate with us in some way by using switching.

We still haven’t been able to get Lewis in his pool (which was donated by Make A Wish Foundation) as the weather has been either too wet or too windy! But Lewis still loves his bath every morning!

We are now preparing for Lewis’ 4th birthday! This is a very special time for us as we didn’t think he would have a 3rd birthday, so to be celebrating his 4th is so super for us all!

Thank you very much to Post Pals and posties for all the wonderful Christmas cards and gifts Lewis and Samuel received – too many to count! Thanks also to our regular Post Pals for our post in January. Receiving a postcard, letter, gift or even an email really does make us smile. Lewis recognises his name and so we always show him the envelope when we receive Post Pal post so that he knows it is especially for him!

Happy New Year to everybody! Let’s hope 2008 can be good to us all.

Update 4th December 2007

November was not a very good month health-wise for Lewis. I knew there was something wrong, I just couldn’t point to what it was, but he wasn’t himself. He was under the weather, not very happy, and generally not well. We made several visits to the assessment unit at the hospital and finally Lewis was admitted with pneumonia, so we spent a week in hospital and then the rest of November at home avoiding people (germs!) and trying to get Lew back to full health.

Lewis’ new bedroom is now complete and he has started sleeping in there properly. His new bath was plumbed in last week so we are still getting used to that, but Lew enjoys it! He has not been able to go in his spa pool from The Make A Wish Foundation, but we hope to when it stops raining, now that he is better!

Thank you to all who have sent us emails and cards. We really do appreciate it very much. Thank you very much to Sami (K) for the get well card for Lewis and also to Despina Ropa for the lovely Christmas card all the way from USA!

Update 31st October 2007

Well it seems that each month we are super busy! This month Lewis had five really big and exciting things happen! First of all we went to an open day at the Bluebell Wood Childrens’ Hospice near Sheffield which will open in Easter 2008. It has been an ongoing project for some time now and it is finally getting to a stage where the families of children who are cared for in the community by the Hospice could go and have a look around. It was a very emotional day, enjoying the atmosphere and the surroundings, but at the same time knowing that we all there because we have a very poorly child. Lewis got to meet some Star Wars characters as well as making eyes at lots of pretty ladies!

Next up was going to London to collect Lewis’ Bravery Award at the Best Wellchild Childrens’ Health Awards 2007. Lewis was presented his award for bravery by Mark Foster, an Olympic and Commonwealth champion swimmer. Lewis loves the water and so to have his award presented by someone who also loves water was very special for us. Lewis was also presented with a special anniversary award to mark the 30th anniversary of the Wellchild charity, and this was presented to him and the other children by Prince Harry himself! It was amazing to meet with Prince Harry, he was so kind and caring and really interested in the children who had won awards. We got to meet a wonderful young lady called Natalie Robinson who also won a bravery award and who also lives very close to us, so that was very exciting too as Lewis loves young ladies, especially blonde ones!

We had an overnight in a hotel in London and the following day we went to London Zoo! Unfortunately it was very busy, as it was half-term week, but we did get to meet up with Lewis’ aunty Nicola and cousin Evie who live in London, as well as our friend Catriona and her two daughters Tilly and Eliza who also live near London and who we rarely get to see. Most exciting of all, Lewis finally got to meet his buddy Nathan Bovell who is very much like Lewis in his undiagnosed condition, except Nathan was born very poorly and Lewis was fine until he was 2 years old. Again it was a very emotional day with lots of cuddles and kisses and tears, but lots of happiness and smiles too.

Back at home it wasn’t long before we were packing again for our mini holiday in Cleethorpes. As you may recall, in August, we were taken by a charity to Disneyland Paris, but Lewis was so ill and ended up in hospital there. So we decided to try again with a little holiday at a local seaside resort (just one hour away from home) in a caravan. Unfortunately Lewis was again very ill and we had to take him to hospital in Grimsby and then bring him back home to our own local hospital here in Doncaster so that was another holiday cut very short by illness.

Lewis is still not 100%, but for a few days he was very very poorly, and reminded us of December last year when we didn’t know if he would reach his 3rd birthday. Because of his condition, he can become very ill very quickly, so when he shows small signs of illness we have to think fast to prevent him getting much much worse.

The final exciting thing for Lewis this month has been his sensory room. We have been fundraising to buy Lewis some sensory equipment and it arrived this month so Lew now has a wonderful place to relax and chill, and that has come in very handy this past few days with him being so unwell.

And so today it is Halloween! Lewis is well equipped with his sticky spider web, his glow in the dark skeleton, and his fab spooky Halloween cards from posties Kate Dee and Karen (Sami) Winch. Thank you so much Kate and Karen for your lovely gifts and the cards which are super creative and which will (after Halloween) go on Lewis’ postie wall.

A huge thank you as well goes to Helen B for Lewis’ blue card for his new bedroom. Everybody who has a look at Lew’s new room always has a look at the card and says ‘I wish I could do things like that!’ It is on Lew’s windowsill and will be put in a frame when he finally moves in! At the moment we are waiting for his bath and bed to arrive!

Update 5th October 2007

September was a very busy month for us. We have been catching up on all the activities that were not available during the school holidays, enjoying music and massage and catching up with Lewis’ friends.

We visited a local school and Lewis will hopefully be starting there (just half a day a week) in January. It’s a school for children with physical disabilities and it offers some amazing equipment and experienced staff, so we might even be able to get Lewis communicating with us in some way, because at the moment all he can do is make choices with eye pointing, and smile to let us know he’s happy or cry if he’s sad.

The conversion of our garage into a bedroom/bathroom for Lewis is almost complete and we are very excited about it! Lew has been able to choose the paint colour for his walls and he is having blue! Also, his new indoor chair has arrived. He had a giraffe chair which he grew out of as he is growing so fast! So he now has a very cool BLUE triton chair which he loves!

We had results back from his tests taken in July and they were all normal, so we are having a rest from tests for a year or so. Lewis has definitely grown out of his reflex anoxic seizures, which is AMAZING! And (fingers crossed) he hasn’t had an epileptic seizure for almost 2 months!

We are excited about going to collect Lewis’ award later this month for Best Brave Child age 2-3 years, through the Best magazine and Wellchild Charity Children’s Health Awards 2007. We will be getting Lewis a smart outfit to wear to collect his award, I have a feeling his outfit will be blue! It’s his favourite colour at the moment!

Fingers crossed, Lewis’ health has been good over the summer except for the odd temperature spikes which come for no reason and go within 24 hours. We are hoping that this winter will be a lot gentler than last year when Lew spent a lot of time in hospital.

He is such a handsome young man, he’s so brave, he has a wonderful smile and we are so proud of him!

Update 31st August 2007

Doesn’t seem like a month since we did the July update! August has been very, very busy!

At the beginning of August we went to Disneyland Resort Paris with a local charity called Bati-About-Kidz. Unfortunately, Lewis was ill and ended up in hospital while we were there so we didn’t get to see much of Disneyland, but thank you very, very much to the charity for taking us.

Our friend Mike ran and completed the Monschau Marathon in Germany on 12th August and raised lots of money for Lewis’ Fund so that we can purchase sensory equipment and a touch screen computer for him eventually!

Lew’s PEG is doing really well, we’re pretty much used to it now and it’s so much easier to use than his NG tube was! Lew is continuing to grow and we are now awaiting his new indoor chair as he has grown out of his giraffe chair already! We are also waiting for work to start on converting the garage into a bedroom for Lew so that we will no longer need to carry him up and downstairs for bathing and bedtime. We are very excited about the new room as once it is complete we will be able to purchase some sensory equipment with the Fund.

Some exciting news – we approached the Make A Wish Foundation about Lewis having a wish from them and they have (in principle) granted his wish so we are waiting to hear more about that – will let you know when we hear!

And some very, very exciting news – we are 99% sure Lewis has grown out of his reflex anoxic seizures!!! Lewis has been having these since he was around 6 months old – it is an involuntary reaction to pain or fear which would cause Lewis to stop breathing, his heart to stop beating, his brain to flat line for a few seconds. During this time he goes blue and stiff and then very floppy before taking a breath and coming back round. It is very distressing to watch and at one point Lew was having these several times a day (he developed a fear of being laid down on his back). He hasn’t had one for a whole month so fingers crossed they have gone for good!

Later this month Lewis and I had a little holiday in Scarborough (just for one night) and enjoyed visiting the Sea Life Centre, Scarborough Castle, and walking along the promenade enjoying the sights, smells and sounds!

We are looking forward to the schools starting again after the holiday so Lew and I can start going on days out again! During the school holidays, everywhere is so busy that it makes visiting attractions very difficult with a wheelchair, so we are looking forward to getting out and about again!

A quick THANK YOU very much to postie Karen (Sami) for Lew’s giggle stick, wiggly snake and very cool train card! A big hello to Lewis’ two regular posties Sian and Lawse.

Looking forward to September!

Update 1st August 2007

July has been a very busy month for us! We met up with some very good friends for a fantastic Fun Day and Lew had his face painted! I don’t think he was so bothered about the face painting, but he fell in love with the very attractive young lady who was doing the painting and enjoyed the 20 minutes he could gaze into her eyes!!

Lew’s nasal gastric tube decided it didn’t want to stay put and it came out several times this month. It was very frustrating as it is such hard work for Lewis and for me to have to re-pass it, but it was lovely for Lew to have some time without the tube during the day, to have a rest!

Lew had a few big seizures earlier this month, we could tell he was under the weather but could not pinpoint the exact problem. He didn’t have a temperature, but he wasn’t himself and it was clear he wasn’t feeling very well. He has more seizures when he is poorly and he was having on average 2 a day for a few days but thankfully that passed after about a week.

The week before Lewis’ surgery we avoided everybody! We didn’t leave the house very much (which wasn’t difficult with the terrible rain and flooding) but we got very bored not seeing anyone!! We didn’t want Lew to catch a bug just before his surgery though and have to have it postponed!

On Monday 16th July, Lew was admitted to Sheffield Children’s Hospital for his PEG surgery. The op went really well, Lew came round from the anaesthetic much better than expected and we were able to go home on the Thursday, having done the fast track course on PEG care! Lew looks so much better without the ng tube taped to his face and of course he can breathe much better too because it’s blocking his nose and his throat.

The stoma did become a little infected so Lewis is now on antibiotics (oral and cream) and it has cleared up very nicely, however it is now over-granulating which is when the skin tries to heal over the stoma site…! So we are awaiting some magic cream to hopefully ‘dry it out’, but if that fails, Lew will have to have it cauterised, but that is a last resort. Feeding and giving meds via the PEG tube is so much easier as well! It’s great! No more ph paper testing! Hooray!

While Lewis was in hospital he also had substantial bloods taken (for various testing) and a rectal biopsy. The results of these tests will take some time to come back as they are rare tests which require specialised culturing, etc. We have already been advised that the conditions that are now being tested for are very rare, are untreatable, and are incurable – but the general medical opinion is that they won’t find out what is wrong with Lew – that he is an enigma!

I found out just last week that Lewis’ dad had nominated Lewis for an award – the WellChild and Best Magazine Children’s Health Awards 2007. I found out because the organisation telephoned me to say that Lewis had won the Award for the Best Brave Child 2-3 years old category! So in October we will (Lew’s health permitting) be going to an awards ceremony in London to collect Lewis’ award!

A friend of ours is running a marathon in Germany to raise money for the Lewis Jeynes Fund on 12th August, and so I have been given the job of printing his special t-shirt to wear on the day! I have sneaked the Postpals logo and website onto the t-shirt so let’s hope we can get some more post for our pals!

Thank you to pals who sent Lewis Get Well cards while he was in hospital and when he had come home. Thanks to Sian who is a regular Post Pal for Lewis and sends us letters often. Thank you to Post Pal Helen who sent Lew a lovely windmill! Thank you also to Post Pals Sian and Jamie for the fab stickers! Thank you Post Pal Declan for the wonderful glowing monkey! And thank you to Nathan for the bouncy boingy monkey!

Update 5th July 2007

Lew has been stable for most of June, however as we have moved into July he has started to deteriorate noticeably and have more seizures and absences than he has done before. He is not as ill as he was at Christmas, but he seems to be heading that way, so we are hoping that he will be able to fight off whatever it is that is making him ill. He is also struggling with his head control and we are looking at a new car seat as his head flops forward almost constantly now and blocks his airways so I need to pull over and put his head back so that he can breathe again. We have now moved his car seat into the front seat so that I can keep a closer eye on him while I am driving.

On 11th July, Lew should be in an article in the Daily Mirror in their Health supplement. Do look out for him (and the rest of us!)

On 16th July Lewis goes in to hospital for a rectal biopsy, blood tests for several very rare genetic conditions, and for a gastrostomy so we can say goodbye to the horrid nasal gastric tube for good (we hope!)

Please do think of Lew while he’s in hospital. We’ll be at Sheffield Childrens Hospital, Western Bank, Sheffield, South Yorkshire, Ward S1.

Thank you so much to fellow PostPal Declan K for the lovely STAR card and the glowing monkey and the totally cool Bob the Builder pyjamas!

Update 11th June 2007

Wow what a wonderful gift Lew received today from you all! It was the best surprise, as I was feeling so miserable because Lew pulled his tube out 4 times in the night and he is on night drip feed so it’s a major panic every time, especially when he just pulls it half out so it’s still going in but who knows where its dripping to – stomach or lungs? We were both soooo tired, fed up, miserable, and the postman said ‘oh I’ve got a parcel for you as well’ and Lew watched carefully as I unpacked and… well gorgeous!

It hasn’t got a name yet, but it hasn’t left Lew’s side since it arrived. It’s been to taekwondo with us this afternoon (to watch Lewis’ friends) and now it’s on Lew’s bed next to him so he can see it when he wakes up.

Thank you so much for making our day very special (again).

Update 6th June 2007

 

Lew has been stable since our last update. He is still very much enjoying his life to the full; he finds lots to smile and laugh at and enjoys meeting new friends and spending time with old ones! He always has a smile for the ladies, especially young, blonde ones!! We are seeing Lewis’ surgeon on Friday to discuss his forthcoming surgery and we expect a date in the next 3-5 weeks. Lew will have a rectal biopsy and quite a lot of blood taken (for the tests Professor Surtees of GOSH asked to be done) as well as having a fundoplication (putting a band around the top of the stomach to prevent reflux) and a gastrostomy (tube directly into the stomach rather than in his nose and down his throat as it is at present). Lew will really benefit from the gastrostomy and fundoplication as he really doesn’t like having the ng tube and its also very stressful for us as parents as we have the constant worry of it misplacing and there is a serious risk of milk/medicine/water being introduced into the lungs instead of the stomach. It’s a huge worry for us as Lew is on overnight drip feed so to have the tube going directly into his tummy will be a great weight off our minds, and will also mean that Lew will have a clear face, no more horrid plasters, and a clear nose and throat. Perhaps the biopsy and the blood tests will bring us back some results – we will have to see. The major worry we have with the surgery is the general anaesthetic. Lewis doesn’t do well at all under GA and we are very frightened, but it has got to be done so I think we just want it all over with as soon as possible so that we can come out the other side, hopefully all of us unscathed.

At home, we are awaiting building work to convert our garage into a bedroom/bathroom for Lewis as he is growing fast and is very heavy!!! We have some money from fundraising which we will use to buy sensory equipment and a touch screen computer for Lewis’ new room once it is finished.

Lewis should be in the Daily Mirror on 4th or 11th July so if you get that newspaper, you can take a look at us all!

Lots of love, hugs and very good health to all our PostPals and thank you to PostPals for Lewis’ fluffy bunny and his gorgeous hug blanket thing!

Update 4th May 2007

Thank you to all our Post Pals who have sent Lewis cards, letters and gifts. We so enjoy receiving them and it really does brighten our days.

Lewis has been stable this past month. We had our long awaited appointment this week at Great Ormond Street Hospital with the world expert paediatric neurologist. Unfortunately he feels there is no treatment for Lewis, but he has commissioned more tests to see if a diagnosis can be found – but he did say that the conditions they are testing for are incurable and do not have any treatment. All the tests can be done through bloods except one, which will require a general anaesthetic, as he needs to have a rectal biopsy to obtain a nerve cell. Apparently nerve cells in the rectum are very similar to those found in the brain and rectal surgery is a lot less risky than brain surgery. So we are waiting for that appointment to come through.

Once Lew has had his surgery, the Professor wants him to go on a 3 month course of maximum dose steroids to try and control his epilepsy. He said there are of course risks involved with large doses of steroids, but that if Lew’s epilepsy does respond to the steroids then they can look at long term treatment with reduced side effects i.e. giving a huge dose once a month.

We are really struggling at the moment with the hopelessness of Lewis’ condition. We are very sad and low, but we are trying so hard to keep positive for Lewis’ sake. We are going to contact the Make a Wish Foundation to see if they can do something really great for Lew because although his body is now almost completely useless, mentally he is totally aware of what is going on.

Please do look at our website which I try to update regularly with our daily activities and lots of photographs.

Update 3rd April 2007

Lewis has been stable for a couple of months now so we got a bit complacent, but this last couple of weeks he has been in hospital twice (once after 999 call for ambulance) as his breathing has deteriorated a lot and he is struggling with the simple action of breathing. We are concerned that this deterioration of his muscles is passing to the muscles around his lungs and this is affecting his ability to breathe. Lew is still ng tube fed and has real trouble with his secretions, so spends a lot of his time choking and coughing. He still smiles occasionally, but not as readily as before, as he really is feeling unwell at the moment.

He has also started to have a new type of seizure which is distressing him a lot as he is aware of what is going on and finds it very frightening, as do we, because it causes his entire body to go rigid, his back arches, and he gulps for breath. Luckily, it only lasts a matter of seconds.

Lew is currently on antibiotics to hopefully prevent any infection spreading to his chest and we await our appointment at Great Ormond Street on 30th April. In fact it can’t come around quick enough because we really are very worried about how quickly Lew is starting to deteriorate again.

Thank you to Post Pals for your lovely card and gifts. Also, many big thanks to Katie Plant for your letter and your card. I am so sorry we haven’t got around to replying yet but it has just been a bit crazy here recently.

Update 7th March 2007

Lewis’ condition has remained pretty stable these last few weeks. He’s losing small abilities, like he can’t blow kisses anymore or poke his tongue out to be cheeky. His weight is continuing to stay on track and he is soooo heavy now!!! I have muscleman arms!

We have our appointment at Great Ormond Street at the end of next month so things are just trundling along until then really.

Lewis’ seizures have increased recently; he’s been having a lot of absences too, so we are expecting him to have a major seizure in the next couple of weeks – not looking forward to that! Especially as so far after each major seizure, Lewis has lost more ability and to be honest he’s not got much left now. He can smile (and what a smile!) and he can turn his head slightly left and right.

Lewis is still on ng tube feeding and we’re pretty much settled into the routine now.

On 28th February, Lewis had his 3rd birthday. Two months ago, we didn’t think Lewis would make it this far, so it was a really very special day for us and we celebrated it in a big way! The house was in chaos, full of people, but it was so great. Lew had a great time but of course was absolutely shattered by the end of the party!

Lewis made an appearance in the local newspaper and then on the local TV news programme and from that we have heard from a charity called Bat-I About Kidz (based in Bradford) who would like to take Lewis (and us too!) to EuroDisney in Paris in August so that’s exciting. We just hope that Lew will be well enough to travel then. They do provide medical assistance and we travel in a ‘jumbulance’ so fingers crossed all will be okay. The hardest thing about not having a diagnosis for Lew is that we don’t know what might happen next. So we literally live each day as it comes and don’t plan ahead. Keeping positive and enjoying every day as much as we can.

Thank you to all the post pals who sent Lewis lovely birthday cards and letters.  We were so impressed with the home made cards – they were awesome! He had the most wonderful birthday and I will be putting photos from his special day on our website very soon! Lots of love and hugs and cuddles to all our post pal pals xxx

Update 8th February 2007

Lewis’ swallowing had returned somewhat, so we tried him with some stage 1 baby food which he LOVED, but unfortunately there is still a huge risk of aspiration so we have been advised to stop the feeding or to give 1 or 2 very small spoonfuls a couple of times a day. As food has been such an important part of Lewis’ life before he became ill, it is actually more traumatic for him to have just 1-2 spoonfuls than to not have any food at all, so we have decided to wait a month or so and see how his swallowing goes.

Lewis’ dad’s company held their annual dinner in London this week and raised over £4000 for the Bluebell Wood Hospice and for Ward 31 at Doncaster Royal Infirmary, on behalf of Lewis which was awesome!

Lewis’ weight is back to normal after he lost 2kg before Christmas, hence our long stay in hospital. So, the tube feeding is doing wonders and my arms are getting super muscly again from carrying him around!

We are collecting his new (CATO) pushchair/wheelchair on Tuesday so we are very excited about that! At the moment he has a Maclaren Major buggy on loan, but it does not offer anywhere near enough support for him so we’re really looking forward to getting his new, custom-built ‘wheels’!!

I tell everyone I can about Post Pals. It is so awesome and I think more people should know about it! It has brought us so much happiness, just to know that people really do care, people who have never met us, don’t know us, but care enough to want to touch our lives.

Thank you to Laura (Lawse) for our cards, thank you so much to Helen for our lovely letter (love the paper!) and to Laura for your very touching letter. Thank you so much Jodie for the cassette of nursery rhymes, to Helen for the orange twirly thing (do they have a name?!) and for the cassettes – we particularly love Postman Pat Takes a Message!

Update 21st January 2007

Hello, I wanted to thank everyone for the wonderful presents Lewis and Samuel received over Christmas from Post Pal friends. We have also received some lovely cards and emails too.

As you may know, Lewis was in hospital (with me!) from 29th December to 15th January and so we are still trying to get into a home routine now that Lewis is on ng tube feeding.

I will get around to sending thank you cards to all those who have sent gifts, cards and kind wishes to both Lewis and Samuel, but until I do, I hope everybody will know how much you have made Samuel and Lewis smile these last few weeks.

Update 3rd January 2007

We have made it into 2007! Lew is still in hospital, on IV fluids as he vomited up his feeding tube! We’ve got to see some specialists tomorrow about feeding and will be here for a few more days at least.

Update 21st December 2006

I wanted to say thank you again for all the wonderful Christmas cards Lewis has received, one of our walls is covered in cards and he has loved receiving them. Samuel enjoyed receiving some too.

Lewis had his 3rd MRI yesterday at Sheffield and he didn’t come round from the anaesthetic very well. As a result, we had to stay in last night. Lew has now been allowed home (hooray!) with antibiotics for a chest infection and antibiotic eye drops for an eye infection! He was fine yesterday morning when we went in for his MRI lol!

He is now losing his right hand as well as his left hand which is very worrying. He is also having real problems sleeping as his seizures/twitches are getting much stronger and keep him awake. He is soooo tired love him, he has bags under his eyes, but still he manages to flirt and blow kisses and smile at the ladies!!! He enjoyed making eyes and blowing kisses at two other patients in the ward this morning before we left.

Well we are back home now and we are having a rest before Lew’s giraffe chair arrives at 1pm hooray! We hope it will give him the support he needs so that he can hopefully be a bit more independent (ie. not have to sit on our laps all the time).

Merry Christmas to everybody and so many loving and caring thoughts to all who need them.

Update 9th December 2006

Well Lew hasn’t got battens! Phew! That was such a relief, its amazing how much better I feel hearing that news! I was so convinced he had it; I was shocked when they said no he hasn’t!

The next steps are to test for mitochondrial disease and creatine deficiency as well as awaiting the results of a gene test for dystonia.

We are being referred to Great Ormond Street early next year and Lew will be having a further MRI in January/February.