Story written 2015

Kai was diagnosed when he was 3 with an astrocytoma. He underwent 18 months of chemo at 5 years old which had to be stopped after 12 months as Kai almost lost his life several times due to infections. Kai’s tumour stayed stable for 3 years and he underwent stereo tactical radiotherapy. He had the first session on his 10th birthday, which was a rubbish way to spend it! However after the radiotherapy, Kai’s tumour grew straight away and he was forced to have brain surgery two days before Christmas Day 2012!

It was when the histology report came back that they gave us the news that it was really rare. It is so rare that Kai was only 1 of 2 children here in the UK with it. The surgery took almost 6 hours and they managed to get 50% out. As the tumour was not fully resected, Kai will just keep on relapsing. So here we are, 4th time relapse. We have since found out the tumour does NOT respond to chemo or radio so our only option is more surgery which is getting very tricky because of the site of the tumour.

Kai is such a happy, loving, caring boy. I’d love to give him the world!!

Update 28th November 2019

Kai has been in a lot of pain lately, we are seeing new consultants at the new hospital and they are wanting to do more surgery on Kai’s tumour. Kai will be 18 on Jan 3rd, we are hoping to take him away to his happy place Lanzarote. 

Update 3rd November 2019

Kai has got a lot of appointments coming up at 4 different hospitals, he has been in a lot of pain for the past month. He’s loving all his post.

Update 23rd April 2019

We would like to put a hold on post for the next month due to moving, I will send you the new address when all exchanged which should be in the next week. Kai is doing very well but is very nervous about the move so post there will be a welcome delight to him. He has had a few occasions recently where his pain has taken over but he is coping well. It will all start again when we move with new hospitals and consultants. 

Update 24th October 2018

Kai is not doing very well at the moment and is in a lot of pain, we are trying to get on top of it but this time of year doesn’t help! He’s also got severe anxiety and that is stopping him from doing many things. We have a few hospital appointments coming up in October and November. He is still loving the small amount of post that he’s receiving, mainly from Bev every month and cards from Marty Longo.  I am not well myself at the moment and haven’t been for 6 months so it’s been difficult on Kai, but he’s a star as usual! Love and hugs to you all x

Update 7th March 2017

Kai is no longer at school, it has been deemed he is too ill medically to attend mainstream school so is being home educated full time. He is missing his friends, so desperately needs cheering up!

Update 4th January 2017

Kai is doing really well. He’s back to school. He has the odd few bad days, but other than that, he’s great!

Update 6th September 2016

Kai is doing well, pain is well controlled most of the time with a concoction of medication. MRI next week so will see from there how things move forward.

Update 7th August 2016

Kai is doing very well, NG Tube has been removed and he is still in rehabilitation for approx next 6 months.

Update 3rd May 2016

Kai’s still on a feeding tube but able to eat certain things, so please check before sending. He has had an MRI which shows a stable tumour. His pain is being managed by a lot of opiates but he is remaining well at the moment.

Update 21st January 2016

Kai is now being tube fed, so please don’t send drinks and please contact us if you’re sending food so we can confirm if he can eat it or not. He is due another tumour debulk at the end of January where he will be out of action until at least Easter time.

Update 23rd September 2015

Kai is doing well at the moment, he has returned to school and is enjoying doing normal things again. He still has ‘off’ days and looks to his post from Post Pals for comfort at those times.

Update 10th July 2015

Kai is going in to hospital this Monday at Kin’s College and his operation will be first thing Tuesday morning. We will let you know how it goes.

Update 4th July 2015

We have been told if Kai is operated on again he will become blind. He will lose his sight and also the use of his arms and legs! We are seeing another neurosurgeon in Newcastle on July 29th for a second opinion.

Update 1st May 2015

We would love to say thank you to everyone sending Kai post. We will get round to replying once Kai is able to do so again. We are awaiting a date for his next brain surgery but he loves getting all his post.

Update 14th April 2015

Kai is very unwell at the moment. We are awaiting more brain surgery in Newcastle where we will have to relocate for some time. He is in a lot of pain daily and very heavily medicated but enjoys all his post and very much looks forward to it on a daily basis.

This month he has received lots of lovely happy mail and lots of post from one lady in particular, Skye in Australia. Thank you to everybody.

Update 1st February 2015

Post Pals has been fantastic and Kai has very much enjoyed receiving the post. It has given him a new lease of life to wake up every morning.

Please note both Amina and Rida do not eat non-halal meat so please be mindful when sending post.

Please do not send Halloween themed post to this family

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 28th February 2024

Update 7th September 2022

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!

Please don’t send hard or sharp things, feathery things that may damage her eyes, or anything that may damage Rida’s skin. Please do not send any drink items to Rida.

Please only send HALAL food items to this family

Please do not send any halloween themed post to this family. 

Story written 2015

Rida was born with RDEB (recessive dystrophic epidermolysis bullosa). This is a rare and painful skin condition in which the ‘glue’ that holds the skin together is missing. So any minor trauma or friction causes her skin to shear or a wound to occur. This is the same with eyes, ears etc. Rida is on overnight feeds as she cannot drink due to the dangers of aspirating caused by the EB. At birth she had no skin on her right leg, left heel, both elbows and a patch on her tummy. It’s all healed but her right leg is still extremely sensitive. Rida takes it all in her stride. She never lets anything stop her even though she’s in constant pain. EB affects the eyes the same way, it also causes blisters which we have to burst and dress. These can occur for no reason and do so on a daily basis. She often gets them in her throat causing her to vomit blood.

In January 2015 Rida is supposed to be having major hand surgery. This can take up to six weeks as she will have to go back to GOSH weekly for three weeks to have her dressings changed under general anaesthetic. Her fingers are fused together and they are operating to open the gap back using skin grafts from her back or thigh.

Rida has never ever complained and is always happy and smiling. She is an inspiration to everyone who knows her.

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

Update 8th November 2024

Update 28 February 2024

Rida has had a settled 2023. This has included many appointments but no stays. Her skin continues to be as fragile as a butterfly’s wing. She has various body wounds now and approximately 90% of her body is covered in dressings. This is ok in winter but in summer it can be very uncomfortable due to heat. 

She’s got more tests and things coming up in 2024, but as ever takes it all with a pinch of salt. She’s the smiliest and happiest child I have ever met, considering the amount of pain she’s constantly in. 

As a family we’ve been through many ups and downs and Amina’s health has suffered a lot as well. 

Her favourite colours are pink and blue. She’s really into shiny lip gloss and other make up. She loves all things soft and fluffy as they don’t damage her skin. She isn’t a big eater and anything she does eat must be suitable for vegetarians. 

As ever thank you to all of you wonderful people for your amazing support. 

Update 7th September 2022

So much has happened since the last update. Rida finally managed to have the hand surgery that was cancelled. It was 5 hours long. They opened her fingers and had to make a cut in her forearm to straighten the veins. She had to go back to theatre for weeks in a row weekly to have it redressed as it wasn’t doable while she was awake. The entire summer holidays were spent in and out of hospital. Now we are doing them at home and she still cries and screams as it’s so painful. Overall, she is still as happy and cheery as ever. I don’t understand how she does it. She’s amazing.

Lastly thank you so much for your post. Your letters, cards and gifts, everything. It makes such a difference to her day. Thank you.

Update 25th March 2022

In April Rida’ Mum became very unwell and spent most of the next year in hospital, she was in a coma for months and had a transplant but is now home.

Rida is doing well but providing her swabs are clear she has major surgery on the 29th of March. She won’t be able to use her right hand for about 5 weeks but hopefully once recovered she will be able to use her hands more than she currently can.

I would like to say thank you to everyone for their love and support while I was unwell too. A big thank you to Maureen and Wendy.

Update 26th March 2021

Ridas fingers have curved even more and she cannot straighten them. She’s awaiting surgery but it’s classed as non emergency so we have no idea when it will be done. As summer and warm weather approaches here itching increases resulting in increased damage.

Update 6th February 2021

Ridas skin is very very bad at the moment. Predominantly her waist and she’s in a lot of pain. To top that off she needs more throat surgery and her gastrostomy also

Update 20th August 2020

Rida has just had her 6th bout of throat surgery. At the moment she is really struggling with pain, but trooping on with a smile. She never ceases to amaze us.

She is due to start secondary school in September so all the relevant training is being put in place. She will be using her wheelchair in school which is a big step and a new thing for her but her legs are weaker. Her bones are very weak and she has to now have bone strengthening IV every 6 months. She had 2 fractures in her back which went unnoticed and healed incorrectly and now cause pain randomly.

She is on the list for major hand surgery and is still tube fed overnight. She still aspirated and isn’t allowed to physically drink anything.

Update 4th December 2019

November sees the start of many appointments for Rida. Almost every other day. Her neck is very very sore and raw and no matter what we do her hair is stuck in the mornings causing immense pain when it’s pulled out. She’s due surgery for her hands maybe around January. Both legs each have a very deep wound. A huge one which is requiring regular morphine yet despite this she is always smiling and laughing.

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 8th October 2019

Rida had a very rough end to August and start to September. She was hospitalised with a bad back which ended up with a 5 day stay, fractured back, bone which had healed wrong, vomiting, big spikes in temperature and possible sepsis. Her surgery was cancelled twice but 3rd time lucky and it was a success. She’s already missed so much school. This was very hard for her as she missed her friends. Now she’s back she’s hoping to catch up.

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 1st September 2019

Rida is again having throat surgery and also teeth extraction. This is bad enough for a normal child but for a child with EB it is doubly painful. She is also having major surgery to her hands as one has turned the finger into like it’s gripping something and the other is fused. This is a six week extremely painful procedure and will be lot of time off school.

Update 21st March 2019

Rida is not well at all. She’s been off school for 5 weeks with wound after wound. She’s been given a wheelchair as walking is getting too strenuous. She also got food stuck in her throat which cause severe damage which then in turn caused strictures. She spends half the night gagging and spitting because she can’t swallow. She’s not physically eaten for 5-6 days and is solely relying on her overnight feed. She misses school, her friends and teachers. She’s very upset. She has been put on the list for emergency surgery and I am actually writing this from her hospital room waiting for the surgeons to call her.

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 WangleBev 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 understandand 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

Rida is really struggling in the heat. Her wounds are getting larger, more severe and painful. Bath time is horrendous and she screams the house down and now the same is happening at bedtime because her body relaxes and she feels the pain more. Dressing changes are also awful. She’s missed so much school due to pain. Rida loved the party and her favourite part was the beauty parlour.  She enjoyed the lucky dip and made some cute key rings at the craft table. It did take its toll once we got home and we had lots of tears but she had a fab day.  Thank you to everyone who worked so hard to make it happen.  We are waiting on surgery date for her hand operation. Her hands are getting worse and her fingers are getting more fused making them smaller. Thank you for all the post she’s gotten. She likes to read the letters herself now.

Update 2nd June 2018

We’ve been very busy Miss Rida wise! We went away which kind of turned into a nightmare. Rida’s throat was all but closed and she was surviving solely on feeds. She was choking on everything, which was hard to watch. She was slamming cupboards in frustration as there was nothing she could eat. We came home mid April and we got her in for surgery asap and had her 5th esophageal dilatation. Her oesophagus was 4mm.

She’s ok throat wise, but is now on the list for hand surgery as her fingers are fusing together. This will be a six week process and very painful. I will update more once we have dates. Currently both are looking forward to Eid!

Thanks going out to every single person. Ellie, Beverley, Bev, Sylvia and Roy, Anna, Wendy and Charles, Rebecca, Badge, Gaynor, 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.

Thank you post pals.

Update 1st October 2017

Another admission for Amina and leaving Rida home has left both girls distraught. Amina is currently on day 9 of IVs. She is obsessed with Harry Potter.  Her collection of stationary 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

Rida is heading towards more throat surgery. She had bloods done recently which was extremely traumatic and she screamed and cried. She also had an accident pulling the skin off her hand and wrist which had to be pushed back as it lifted off like a glove. This was very painful and took ages to heal as the blisters kept reoccurring. Currently her waist and left leg are very very damaged and need changing often.  She’s due a heart scan as she keeps getting chest pains and the doctors are concerned. Rida was upset when Amina went hospital as she is getting older and understands more that the family is split in half.

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.

Rida has a possible overnighter on 4th May and they will decide about more throat surgery. It will be her 5th. She’s due for hand surgery at the end of the year as well. It will be a difficult time as it’s a 6 week process.

Update 4th January 2017

Rida had surgery for her throat at the end of August just before Amina’s admission. This was her 4th throat operation and they told us it had closed to 4mm which is why she was struggling to eat and swallow.
Currently she has massive bleeding wounds on her right leg. These are so severe that they need changing twice a day. They are bleeding right through the dressings. She’s so brave that she never complains and it’s heartbreaking to see the size and extent of the damage on her little leg. Her waist is also very damaged. It’s also got extensive wounds, then yesterday she dropped a shoe on her foot and hurt her toe.
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 have never met can care. Extra thanks to Vikki for this amazing page and group.

Update 4th November 2016

Rida has been having a very tough time. She has huge extensive wounds on both legs and massive sore areas on her waist. These are having to be changed daily and results in pain and tears. She also has wounds and dressings under each arm and these are fortunately healing. The waist wounds are very deep and bleed a lot. The cream used stings and she cries when it’s put on. There are wounds on her knees and behind her knees and also 1 ankle. This is all making daily life a struggle. We have recently been told she may have a heart problem and are awaiting an appointment from cardiology. She is also going to be referred for surgery on her hands as her fingers have fused quite far up. This is a 6 week process. Her eye is also starting to stick to her lower eyelid and may also require surgery. Despite all this she is always smiling and happy.

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

Rida currently has a very sore waist, its dressed and bandaged but still painful. She almost took a tumble down a flight of stairs but caught her balance in time. She still twisted her ankle and has a blister on her foot preventing her from running too much. She also has a sore leg and it’s always needing to be re dressed which she hates. 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

For the past 5 nights she has been waking at random times and started to gag, retch and dry heave. She’s saying there is a blister in her throat as these are the usual symptoms. However after almost 2 hours of this and exhausting herself it wore off and she fell asleep. This was Monday night. The same thing happened on Tuesday. Then again on Wednesday when she woke at 3.30am and was up spitting whilst gagging and retching until 5am. There was nothing we could do except hold her and console her. After speaking to her nurses they think she not only needs an emergency oesophageal dilation but also its a stricture that is causing this. When she lays down, pressure on the oesophagus is causing this. Needless to say it’s a nightmare to watch. She’s been booked in for emergency surgery on Tuesday.
Along with this her lower eyelid was slightly attached to her eyeball due to an old blister, this seems to be spreading so we could be looking at eye surgery as well.
She is refusing to sleep due to fear of the waking episodes. She hasn’t eaten for 5 days and is surviving solely on her overnight feeds.

Update 8th July 2016

Rida has had two accidents at school. The first time she tripped over a drain and wounded her leg. The following day another child tripped over her foot causing a huge blister underneath her foot. She is currently unable to wear shoes or walk for long periods of time and is in pain. Then at 2am she woke crying as she had a blister in her throat. She spent an hour gagging and retching while we tried to get her to eat ‘sharp’ food in the hope it would burst. Well over an hour later it burst and she did a blood vomit, then fell asleep as she was exhausted. The following day I went to bath her only to discover her vest stuck to a huge wound under her arm. I had to slowly rip it off and it was horrendous … she didn’t even cry, she was so brave.

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

Update 20th May 2016

Rida has just informed us of a huge blister on the back of her left leg. It’s been burst and dressed. She’s now in pain as she cannot straighten her leg and is crying, also she’s upset as she knows about Amina and doesn’t want her to go to theatre.

Update 4th May 2016

Rida is having problems with wounds on her neck. They are recurring and unfortunately as they are in a strange area they cannot be dressed. Her hair gets stuck in the wound and has to be pulled out. As you can imagine this is very painful, yet she never complains. She now has dressings on both legs as her other leg is also damaged. Surgery also looks impending for her throat – for the 4th time – as she’s choking on food again.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. Thank you for Rida’s stitch soft toy … even though she was afraid of it at first!

Update 5th April 2016

Rida had a scare recently; she became very unwell and ended up in A&E. It was a very frightening time as her head was effectively ‘leaking’ some sort of fluid, to the point where I was wiping it away for hours on end. It slowly (over 2 days) stopped. She then got a lump on the back of her neck which the doctors said may be cancerous and needs to be checked. Needless to say, our world stopped spinning. We went to Great Ormond St. and had it checked. Turns out it was all a huge infection and the lump was a reaction to the infection. Phew!

She just took it all in her stride. Presently she has a massive raw patch on her bottom, and she had a blister under her arm the size of a large marble. Yet she hasn’t complained or cried once.

Big thanks to Wendy, Claire, Ginny and everyone else. Also to the extra smiles team for the cake!

Update 3rd March 2016

Rida’s skin is sore on her elbow and left leg. There seems to have been an infection because the wound became filled with yellow stuff. It was hard watching her go all quiet and subdued, which is what she does when in pain. It’s now healing but as with her sister, losing her grandad has hit her hard and she is finding it difficult to accept she won’t see him again.

I’d like to thank Ginny and Wendy and everyone else for all the post, cards, gifts, emails, 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’ grandad passed away. It was so sudden and shocking as he wasn’t even unwell. 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. Rida is ok, she has some really sore areas but was too sad about losing her grandad to complain. It was horrible seeing her so upset. Now we are home they are even more upset because they say granny is on her own. Apart from this, onwards and upwards. Massive thank you to Ginny, Wendy, Anne and the school in Cyprus for the presents. Also to everyone who wrote an email, letter, card, etc. thank you all so much.

Update 21st January 2016

Rida is very sore. She has large wounds on the back of her leg and is having dressings done almost daily. It’s heartbreaking to watch. How she isn’t screaming in agony is beyond me.

Onto 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, emails and messages.

Update 5th January 2016

Massive huge thank you to each and every single person that sent cards, letters, presents and even emails. 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’s so many I don’t know where to start.

Rida has hurt her foot – again. And yesterday she got too close to the DVD player, head butting it and taking a bit of skin off her forehead. Then today she got hit in the face with Iron Man whilst playing with her sister and now has a nasty wound on her chin. Not a good way to begin school. She has a big appointment coming up and may need some help in the form of foam or wedge-y type things in her shoes to bring her feet out as they are starting to turn inwards, causing her to hunch. Not sure how she will react to this.

Update 3rd December 2015

Rida is having an emergency operation tomorrow as her throat is closing up due to scarring. She was okay about it, but seeing her sister Amina upset has upset her too and now she also cries at the smallest thing. To sum up, I have two very poorly and very sad children at the moment. Saying this, I am hoping to take them both to Lapland on Wednesday, so please send positive vibes that they are well enough to go.

Update 25th September 2015

Rida has hurt her foot quite badly, and she also ended up in A&E with chest pains a few days ago. The chest pains were viral and are now a little better. Her foot is slowly healing, but she has had a lot of time off school already. Her ear is also sore and there may be an internal infection. She’s already had one infection.

Amina is due a hospital admission, and the worst part of all this is it’s Rida’s birthday on the 8th of 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. On the upside, she’s looking forward to seeing how many cards she will get from her Post Pals and if it will be more than Amina!

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 girl’s 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

Rida had an appointment recently and was told she had an infection in her wound that could be potentially dangerous, so she’s now on medication. She also had a blood test done and had to be held down by three people, which was very distressing. The physio has also told us she will need special soles made to put in her shoes as her feet are bending inwards. This should fix the problem over time.

Thank you for the girls’ post. Please can I ask that Rida isn’t sent any small plastic confetti in cards though, as there was a bunch in one of her letters and as she opened it, it hit her in the eye, resulting in a damaged eye. Thanks again.

Update 6th July 2015

Both girls are now home but they are slightly struggling with the heat due to their illnesses. It’s particularly hard for Rida as she has all her dressings on and then her clothes on top. She also isn’t allowed to drink anything so that makes it even worse. I hope it doesn’t get too much hotter.

Thank you to Wendy for the sticker books and also to the paper cutting group. I got a beautiful frame and so did Rida. Big thanks to Emma Jenkins for my frame and gift, it made my day!

Update 18th June 2015

Rida is in a great deal of pain at the moment. Due to summer weather, her dressings are making her itch more than usual and causing new wounds. She has a big sore on the back of her left knee which means she has been unable to stand straight for almost a week now. It heals and then she scratches and we are back to square one. It’s not always easy to bathe her as bathing can be painful and we are running out of distractions. At the moment I’ve been doing her dressing 4-5 times a week, which take up to 1-2 hours at a time and is extremely hard work, as you can imagine.

Hopefully now Amina is home from hospital we can concentrate a bit more on Rida. I don’t know if I’m coming or going at the moment, and Ramadan also started today so we are now fasting as well.

I wouldn’t change my girls for the world. My beautiful princesses.

A massive thank you to the ‘we love paper cutting group’ for Rida’s frame. Thank you for all our post. 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 on day 17 in hospital with no news of when she’s coming home. Rida is really missing her sister now as they have never gone this long without seeing each other.

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

Rida is well at the moment but is upset seeing Amina so unwell. Amina is waiting to be admitted to hospital for IV antibiotics.

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 a hospital admission soon and my hearing loss is going to make things a lot harder.

Update 5th April 2015

I can’t tell you how happy little miss has been because all the well wishers have ensured she hasn’t been left out as it was Amina’s birthday recently. However she received so much stuff as well she though it was her birthday too!

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 five teeth out as planned, they took out seven!

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 IV’s 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!

**Please only send food/sweets suitable for vegetarians. Please don’t send sweets containing gelatin or alcohol**

Story written 2014

Safaa was born on the 24th April 2009. She was our first child and both my husband and I were very excited. She was born on time and was a normal healthy baby reaching all her milestones. After 9 months’ maternity leave I went back to work part time and Safaa’s dad was working full time. At age 11 months we gave her the normal routine vaccinations, she had been fine with all the other previous ones so had no reason to worry about these ones. However, this time round she became very poorly with flu like symptoms and generally being very upset, constant crying, not feeding and not sleeping for nights on end. Her eyes, arms, legs and head were also shaking constantly. Safaa was able to stand and cruise however within a matter of a week she lost her ability to do so. Her body was shaking/trembling involuntarily and she could not even sit up.

On 18th April 2010 we took her to the doctors and got sent straight to Preston hospital. We could see that the doctor was clearly worried but we had no idea and were not prepared for what was to come. The doctor did some examinations on her and more doctors followed one after the other. Safaa would not let them check her and would scream and cry, she was not my happy little baby.

A consultant neurologist then came and told us his initial thought was it is a rare type of cancer called neuroblastoma and associated illness called ppsoclonus myoclonuss syndrome. They then carried out a series of intrusive tests and scans. They did ultrasounds, MRI, blood tests, lumber punctures and lots of other things. My poor baby was being poked and prodded everywhere. I spent my first night in hospital with Safaa, however she did not sleep and cried all night.

The next day we got told the test results were back and it was what they thought – she had a neuroblastoma tumour next to her spine. I again had another first – a ride in a hospital ambulance. We got transferred straight to the specialist hospital Royal Manchester Children’s Hospital which was then to be my home for the next five months. That was also my last day at work. At Manchester Hospital they re-did all the scans to ensure the cancer had not spread further and fortunately it had not. My husband came with all bags packed with clothes and we got given a room to stay. Everyday was the same, Safaa would be unhappy, constantly crying, would not eat, and on top of that she was physically deteriorating. The constant medicines, being hooked on machines, and being surrounded by nurses and doctors made it worse.

Her 1st birthday was in the Oncology ward at Royal Manchester Children’s Hospital – the nurses threw her a surprise party which was very sweet but she was far too unwell to enjoy it. We got told she would need six hours of surgery to remove as much of the tumour as possible. This was scheduled for 20th May 2010 and we got started on an initial course of treatment. It was a waiting game until 20th May, we were all very anxious and did not know what to expect. Dad also had to take time off work. Family visited everyday and it was very tiring for us physically, mentally and emotionally. We did not know what the future held.

The 20th May 2010 came and the surgeon went through all the pre-op procedures and asked for consent. We got told as the tumour is so close to the spine there was a chance of paralysis. I could not sign the consent form so dad had to do it. Six hours of waiting seemed like six days. By the grace of God, the majority of the tumour was removed, however they could not get all of it due to being next to the spine. The tumour was the size of two balls. We were very relieved and thankful the operation went well.

However this was only the beginning and the real hard work was now to start. Safaa got an infection during the operation so had to be in ICU and we got told the opsoclonus myoclonus syndrome was very rare and that was a big problem as it would affect her developmentally. In September 2010 we got transferred to Preston Hospital where we stayed for nearly another nine months. She was on lots of medication – steroids, IVIG, dexamethsone, chemotherapy. Our lives revolved around hospitals, physios, dieticians, OTs and lots of other health professionals. We got given a room full of equipment as she could not stand up, walk, talk, eat or sleep. It was all very hard. She had a standing frame which we had to strap her in everyday so she could stand, walker to use but she could not stand so that was pointless, special table and chair, helmet etc. At nights she would be given medicine to knock her out so she and we could sleep. She got given a gastrostomy which is a button in her tummy so we could give her milk.

We decided she needed to go somewhere and after research we found a specialist nursery near Ormskirk called The Legacy Rainbow House which specialises with disabled kids. We spend two hours a day driving to take her there and back. Safaa started there in January 2012. In April 2012 after her 3rd birthday, she took her first very wobbly independent step! Three years on Safaa was still not the happy child we knew though, she would still wake up crying, feeding was still a problem, and she would get very angry as physically she could not do what her peers were doing due to only being able to walk few steps and then falling and having difficulties with her gross motor skills. We were still going for regular scans to check for the neuroblastoma as well as meeting other specialist with regards to the opsoclonus myoclonus syndrome. We were being seen at Preston hospital, Manchester hospital and Liverpool Alder Hey hospital!

Safaa was 5 on April 2014 and the weekly appointments still continue. She has two weekly blood tests and is onto her second round of chemotherapy. She will have had her chemo for 2.5 years now. She gets a lot of side effects from it, however, as she is now older she understands more that doctors are helping her to get better. She also now attends a special needs school full-time and also goes for her two hourly conductive education sessions. She is now much happier, can walk short distances independently, but still has very poor balance and coordination so uses a wheelchair most of the time. Her feeding is improving slowly – she loves chocolate (who doesn’t!) and sleeps at night without medicine. Her eyes and legs do still shake which means illness is still not cured and there is still a long way to go, but along the way we have met and made friends with some very special and incredible children and families.

Update 28 February 2024

Thank you so much for all the post, they do bring us a lot of smiles!

Safaa has had a difficult year. Mid 2023 she stopped eating by mouth completely for most of 2023 and towards the later end of the year – December and New Year – was very ill and in hospital. Throughout all this she was very strong and remained happy. We also realised she can not feel a lot of pain when injured and has a very high pain tolerance/threshold with not even crying or flinching, which is both good and bad at the same time.

Safaa is in year 10 in high school, she has got official diagnosis of Learning Disability and also testing for Autism. She likes school but struggled with the transition to upper school, change is difficult for her to process and took long time for her to settle in her new class environment. 

Safaa loves going shopping, her favourite is Primark, and going to the cinema is a new favourite thing she enjoys. Her other interests remain the same. She now has a mobile phone of her own!

Abubakr is in year 6 at school and is doing well, he is a blessing and really looks out for his sister and younger brother. Sometimes I feel he feels the pressure of looking out for his sister and helping her. His interest are still the same, he absolutely loves football and anything football related.

Muhammad Ali is in year 3 and is a happy chappy and he follows his brother’s hobbies and interests!

Update 27 October 2022

Thank you to each of you that have been sending posts to the children it is really appreciated as brings much happiness to them.

Safaa is in High School although she doesn’t enjoy it much as she doesn’t have friends, it’s sad for her and unfortunately this has been the case throughout most her school life. She has very low self esteem and has begun to just stay in her bedroom most days. 

Her health has also been very up and down she has been off school alot, still has the gastrostomy and her gross/fine motor skills continue to cause issues alongside normal teenager hormonal issues!

Abubakr is in year 5 and is very independent happy at school and home and in good health.

Muhammad Ali is in year 2 and apart from the normal coughs and cold is doing well.

Both boys play for a local football team at the weekend.

Update 21st April 2021

Thank you so much to everyone for all the posts we have received during the last few months we are very grateful – happiness during a daunting time. Medical appointments have restarted again, nothing much has changed in terms of Safaa’s health, slow baby steps.

Let’s pray and hope for a better second half of the year.

Update 12th September 2020

Thank you for all the post especially throughout the lockdown period!

Safaa’s hospital appointments have been via video call with her consultants she has been provided with more ‘equipment’ to aid her daily life such as bath support, stairs and in bedroom and still continues with the medical therapies and milk feeds etc for the foreseeable future.

Safaa has now started high school prior to starting she had extreme anxiety and headaches and vomiting causing her to be in bed however has adapted well to the new school now which is very supportive they are in a small bubble of 4 kids.

Muhammad Ali has also started reception school now and is enjoying it.

Update 6th October 2019

Things have been the same with Safaas health, she has extremely bad days which makes her stay in bed all day and sometimes she has ok days. The days when she is poorly really do take it out of her as she is in a lot of pain and has absence episodes. The recent dietitian appointment outcome was still to continue her feeds and she also has her weekly 1:1 physio sessions to strengthen her legs and core for her balance and stability, along with all her other hospital appointments for her eyes and her weak teeth and Orthotics. We are trying hard to help her manage her ’emotions’ and feelings of ‘being different’ with schools support.

Thank you so much for all the ongoing support everyone provides us it makes such a huge difference to us and it is a source of comfort for Safaa and it makes her feel happy

Update 3rd July 2019

Thank you for all the post. Safaa has been quite ill the past few months and has been off school a lot. She’s been struggling a lot with her behaviour and has been feeling low and crying a lot for no reason saying she feels sad. The post is really helping her to feel special so thank you to everyone.

Update 11th February 2019

Just want to say thank to everyone for all the post. Things are the same; it sometimes feels like two steps forward and one step back. Safaa has been struggling recently. She’s having weekly physio to help her legs. Thank you for Abubakr’s post, he really looks forward to it and appreciates it.

Update 1st November 2018

Just want to thank everyone for the posts you are sending it is really appreciated and eagerly awaited. Safaa has had a rough few weeks she had been vomiting a lot daily – sometimes several times a day making her weak. We have also been trying very hard to toilet train at night time but due to being ill this has not been going very well and milk feeds have to commence.

The boys are doing well at school and nursery, I’m finding Safaa and Abubakr are getting along slightly better which I am really pleased about. There are still jealousy issues on his part but not as much as in the past.

Update 10th September 2018

Thank you to everyone for the post throughout the holidays. The holidays were a bit hard as we were all ill on and off and it was bit difficult with Safaa. There were days where she would stay crying in her room either in pain or just anger/frustration.
The post to distract her and keep her occupied was very helpful, so thank you.  Her left leg has become quite weak again and she had been falling and generally more wobbly.
Safaa has found a new interest – she likes threading beads to make bracelets, it is a good activity for her as it takes her a long time to do it, so keeps her entertained for good few hours and improves her fine motor skills.

Update 3rd June 2018

Thank you for all the post and the amazing trip to Chessington. Safaa has received a new, bigger wheelchair. We are trying hard to get her out of nappies but it isn’t happening at the moment what with the milk feeds daytime and overnight. She is getting to manage her hand coordination and tremors a bit more, but still has many accidents. She still shakes and has body tremors at night.
We are due to see her specialist consultant based at Evalina Hospital, London, soon to see what the next plan is.

The specialist psychologist nurse has been visiting at home and, as we thought, Safaa has sensory processing issues which is normal with brain damage conditions (I sometimes feel the behaviour management is more hard to manage than everything else with the constant tantrums/anger).

Abubakr is nearing the first year at school and is doing well. As he is now able to understand, he did have some issues recently about feeling not ‘loved as much’ and ‘Safaa gets more’. We have tried to explain to him but it’s still not easy for a young child.
He has done some fundraising at school for Post Pals.

MuhammadAli has started nursery – we started him early, as it was now difficult taking him to appointments and dragging him along everywhere being older (2 years old) so it’s easier for us and he’s happy at nursery.

Thank you once again to everyone.

Update 5th January 2018

Winter months are always harder for Safaa as she gets more ill with her low immune system which means it takes longer for her to recover. She’s had sickness which took it out of her. We are having the difficulty as well with her mental state of mind; controlling her moods and anxiety, feeling low and not understanding, being aggressive/sad. Her relationship with Abubakr is also hard at times, although I do have to praise him for his patience and kindness even at such a young  age. Safaa has been falling a lot, she’s lost her balance on stairs and fell, still on night pump feeds and daytime too. She is still wearing nappy pants. Her ASD testing is continuing. She’s had some absence seizures again. This affects her overall and she becomes vacant, so is having to use a wheelchair sometimes which she hates. Her mickey button has been causing her discomfort and she’s tried to pull it out (which is very painful).  Thank you to everyone for all the post we have received, it really helps to motivate her and keep her upbeat and also helps to keep Abubakr happy, as I feel there are times he has to go without/he gets the short straw so we can manage Safaa at home and hospital visits.

Update 5th October 2017

Safaa has been having up and down days. At school she’s been tearful and not eating, and we’ve noticed she’s having difficulty using her hands to hold things like cups and spoons, also her arms are shaking as she tries to hold things. She is on full overnight pump feeds again.
She has had her tests done to check Neuroblastoma (as a precaution) to see if that is contributing to her reduced gross/fine motor skills or if it’s OMS – that was hard for her at hospital.

Abubakr has started primary school in reception class and is very excited and enjoys it, however Safaa is quite harsh towards him as he already knows more academic stuff, which she doesn’t, and that is causing a lot of upset/anger/jealousy.

Update 7th May 2017

Thank for all the post received especially the huge amounts of birthday cards for Safaa’s 8th birthday, they were all amazing.  All 3 kids have been very poorly this month. Safaa has become very emotional and constantly cries and says she doesn’t know why she’s crying. One of the main symptoms of her OMA illness is its makes the child irritable/upset. It can get very draining as any small thing triggers her off and the crying can last for 30-40mins at a time and turn into tantrums, etc. At times she’s been losing her balance and falling which again makes her angry. She has also been questioning why she can’t read like other kids. We are due to have her first appointment with  CAMHS to try and help her deal with it all. Safaa’s doctors have suggested having tests done as the deterioration may mean something further is wrong. Thank you also to Extra Smiles & Stuff in a Box.

Update 8th February 2017

Since Christmas, Safaa has deteriorated and had been showing signs of relapse of OMS. I was hoping and wishing it was just a bad spell with it being winter however the last few weeks she has lost the ability to walk by herself safely without support, her eyes and body is shaking and the worst she is constantly upset and crying which is unfortunately a symptom of her condition – it makes the child very unhappy/irritable. At school she has been sleeping most of the days and at home too. When she is awake she has been having episodes of ‘absences’ similar to epilepsy type seizures. We are waiting on the doctors to maybe do EEG of brain activity and also to restart medication again. Fingers crossed she doesn’t have to restart chemo.

Update 5th January 2017

Firstly, thank you very much for all the amazing post we have received from everyone especially during the Christmas period. It was truly fantastic and brought lots of smiles. Safaa’s health has been ok, she is off all medication at the moment, but has unfortunately had to restart her pump feeds during the day as well as night. She is trying very hard at school and has managed to write her name which we are very proud of. She has lost her balance several times and fallen down the stairs, she also fell and cut her head open which meant stitches – this is going to happen, as on poorly days she loses her mobility. Safaa is now involved with the Learning Disability team who I’m hoping will be able help her more.

Safaa’s brothers Abubakr and Muhammad Ali are both doing well. The playhouse present from Vikki is still as amazing, the kids play in it all day long and call it their secret den.

Update 28th November 2016

This month we had a review with a few of Safaa’s many consultants. Safaa’s condition is long term in terms of the OMS syndrome and of course the tumour which was not completely removed due to it being next to her spine.
Safaa has been on nonstop medication some of it very toxic for a very long time 6 years so it’s has been decided that we now stop it all to avoid damage from the medications and also as they have tried everything they can for her. This is it for her for now at least.

We don’t know what this will mean for her as it has been the medicines which have been keeping her stable and We are slightly upset as we don’t know what will happen now and worried and just pray for the best that she doesn’t relapse or deteriorate. The doctor has said any sign of relapse in her physical ability and we will need to have a look at the tumour again to check it has not grown.

Safaa is still having issues dealing with the fact she is different to her peers and mainly that she can’t read and write. She has also been not eating very well so we’ve had her pump feeds on in the morning.It’s hard for her to understand what is wrong with her so the posts really help in making her feel special.
Thank you everyone.

Update 3rd October 2016

This has been a busy month. Firstly a huge thank you to Postpals for the incredible Chessington weekend away we had the best time so thank you Vikki and team x
Safaa and Abubakr received the awesome playhouse which is a big hit and taking pride of place in the living room! And also the lovely scooters which they are having lots of fun playing with. Thank you for all the lovely letters and cards everyone has sent.

This month we had a review with a few of Safaa’s many consultants. Safaa’s condition is long term in terms of the OMS syndrome and of course the tumour which was not completely removed Due to it being next to her spine.
Safaa has been on nonstop medication some of it very toxic for a very long time 5/6 years so it’s has been decided that we now stop it all to avoid damage from the medications and also as they have tried everything they can for her. This is it for her for now at least.

We don’t know what this will mean for her as it has been the medicines which have been keeping her stable and We are slightly upset as we don’t know what will happen now and worried and just pray for the best that she doesn’t relapse or deteriorate.

Safaa is still having issues dealing with the fact she is different to her peers and mainly that she can’t read and write. It’s hard for her to understand what is wrong with her so the posts really help in making her feel special.
Thank you everyone.

Update 11th July 2016

It was our Ramadhan last month where we fast for 30 days from sunrise to sunset, which is approx 20 hours without water or food. We had our Eid day on 6th July which is a big celebration and lots of eating!
Safaa has been finding things a bit difficult. She has started to question why she is ‘different’ and has to have medication, wear nappies etc. This not understanding is also affecting her behaviour and making her upset. She keeps saying she wants to read and write. It is also upsetting for us as parents to see that she is struggling to deal with things. She is seeing a psychologist but I think she is still a bit young to understand what he says to her.

We have started toilet training Abubakr and he is getting lots of rewards when he manages to go without accidents.

Looking forward to the summer holidays and plenty of fun and hopefully sunshine.

Update 4th May 2016

Safaa’s had a very busy few weeks where she has done lots of special things. She was a mascot for Preston North End Football Club, where she got VIP treatment and got to meet all the players and watch the game. She then did a 5 mile charity walk in her wheelchair with me and her dad, and raised £548 for a charity called Rainbow House where she attends once a week to do physio and conductive education. Then finally it was her 7th birthday and got lots of presents.

Thank you everyone for all the post.

Update 3rd March 2016

Safaa has started seeing a psychologist again to try and help her with her behaviour, etc. We have been blessed with a baby boy and have named him Muhammed Ali, so Safaa now has 2 younger brothers! Thank you to everyone for all the post and the lovely Valentines balloon.

Update 10th February 2016

Safaa has been poorly since Christmas and she just does not seem to be getting better. We have had to also start her pump feeds during the daytime and she has been getting very tired. Since last week she has had very poor balance and has had problems walking without help. She is getting very upset and also angry at the same time. She has been in hospital over the weekend and her little brother is also a bit poorly at the moment. Hope things settle soon as I am due to give birth in 2 weeks! Thank you for all the lovely gifts.

Update 6th January 2016

Thank you to everyone for the lovely post we have received, they were all fantastic. We have had to increase Safaa’s medication this month, as there have been days where she’s not been able to stand up. She’s had a few accidents at school, losing her balance which resulted in her cutting her head so had to go hospital. The increase in medication has been affecting her moods and she has been having a lot of tantrums. The post nearly every day has been very helpful to calm her down, especially all the girly gifts she’s received. Also we stopped her night feeds for a trial but her weight has decreased a lot so have had to restart that again. Hopefully the new year and school routine again will help.

Update 5th November 2015

Thank you to everyone that has sent post this month. Safaa always enjoys the monthly post from Jess, and got a lovely bracelet from Iba, a doll from Helen, and lots of other nice post.

Update 7th September 2015

Safaa was granted a wish to go Disneyland Paris this month and it was really good and we all really enjoyed it. She did get very tired, but overall had fun.

Recently she has been getting more tired and her tremors/shaking has returned, particularly at night time, which wakes her up (a symptom of her OMS condition).

Thank you for all the post received this month from Jess, Dottie and all the other lovely people. Abubakr also received his Paper Cut, which we love, as it is his favourite Mr Tumble theme.

Update 6th August 2015

I just want to say thank you for all the post. The summer holidays are always a bit harder entertaining the kids and the lovely cards, letters and gifts have really helped.

Update 7th July 2015

Safaa is doing well with her medication and has not had many low blood counts recently. She is also eating mainly by mouth now which is a huge milestone.

Safaa’s little brother, Abubakr, celebrated his 2nd birthday on 26th June and we had a little party in Pizza Hut. They both loved the pizza and especially the ice cream factory.

Thank you for the lovely paper cut gift, it is hung up in her bedroom. Thank you for all her other lovely post too.

Update 1st May 2015

Safaa is having more frequent low blood counts and is getting a lot more infections and colds. She has also started seeing a psychologist to help with her behaviour issues.

Every day she comes home from school and always asks if she can open her post, so thank you to everyone that has been sending her post. We try our best to reply to each post but sometimes due to time and other commitments I forget, so apologies and thank you to those whom I have missed replying to.

Update 4th April 2015

Thank you for all the lovely gifts Safaa has received this month. She really likes the bath soap, Easter egg, handbag book and a lovely magic wand. We all really appreciate it.

Update 3rd March 2015

Safaa is doing very well, she is physically getting more mobile and can walk a very short distance. Her speech is coming along well too and she is eating more by mouth. She has started a new daily immune-suppressant medicine but her blood count gets very low because of it and she has been getting very tired and ill.

Safaa really enjoys the post she receives, thank you to everyone.

Update 29th November 2014

Safaa absolutely loves coming home and opening her post. She has been in hospital since Wednesday and it really cheers her up.

Update 6th November 2014

Having had chemo for almost 3 years it is now being stopped this month. Prayers needed as the last time it was stopped she relapsed. She will also be due to start taking daily tablets which for a 5 year old will be very difficult.

I just want to say thank you so much for the balloon yesterday as Safaa was so thrilled by it, especially as it was Frozen. Also from me as a parent, she received four items today and I had a few tears because it made such a nice change to receive ‘nice’ post instead of the usual hospital letters.

Story written 2014

My daughter Annabelle became ill on the 7th December 2012, just one day after I’d given birth to my fourth child, a little boy. She had all the usual signs and symptoms of a bug and a quick telephone call to the doctors confirmed that was the case and we were to dose her with Calpol. We did but she deteriorated quickly and within 48 hours she was in hospital fighting for her life. We were told it was meningitis and our world fell apart. I was re-admitted to hospital myself with an infection in my Caesarean scar. My 2 older children had to be shipped around the country to be cared for by relatives. Lee (my partner and Annabelle’s Dad) had to sort out work and we had a three day old baby we were meant to be bonding with. All this was happening at what was meant to be the happiest time of the year.

Annabelle spent a week in our local hospital on the high dependency unit and although doctors were pretty certain she had meningitis she was too poorly to have the tests and procedures to confirm it. In the doctors’ words, she was too unstable. After a week with no confirmed diagnosis Annabelle had a seizure lasting an hour and 45 minutes. They couldn’t stabilise her and we were warned if it continued that way she would need to be transferred to a specalist London hospital. Sadly that’s what happened and after taking a turn for the worse she ended up on life support. Christmas passed in a blur and we were told to say our goodbyes.

However, after numerous MRIs, lumber punctures, CT scans and blood tests, we finally had a diagnosis – ADEM. It’s a very rare brain disease – her brain was swollen and her spinal fluid was affected too. Things couldn’t get much worse, our lives had been shattered. What made it worse was that because ADEMs is very rare doctors couldn’t tell us exactly how things were going to turn out. She was started on a cocktail of drugs and steroids to attempt to bring the swelling down and all we could do was pray and wait.

Somehow by the grace of God, miraculously the swelling started to go down and after weeks on life support she was finally off it and was eventually transferred to a neurological ward. Although immensely pleased she was off life support and breathing for herself, we were distraught by the ‘shell’ of the happy, cheerful, energetic little girl she once was. She couldn’t do anything now, couldn’t move, speak, smile, swallow, chew or even move her eyes. Her doctors warned us our newborn baby would be able to do more and they were right. Her muscles had totally given up and she had no muscle control whatsoever. She was put on an intense physiotherapy course and had a specially adapted wheelchair made, we took her on ‘walks’ round the ward and together the combination of medication, physio and love from both us and the staff we started to see improvement. Then, out of the blue, E. coli hit the ward and unfortunately Annabelle got it and it put her straight back to square one. She had a long road ahead but kept fighting. Three months in hospital and once again things slowly started to improve. Eventually she was transferred back to our local hospital, then another month later armed with medical supplies and medicines we finally brought her home! This was wonderful news, however it wasn’t without its problems and life changed for us all. We had physio and therapists in and continued to encourage Annabelle to talk, sit, stand, swallow and eat.

She is doing fantastically well now, so much so that to look at her you wouldn’t even know that there’s anything wrong. She still has muscle weakness, swallowing/throat problems, hearing and sight impairments and suffers with extreme exhaustion. We’ve been told by her neurology doctors that one of the main side effects for her will be constant pins and needles and nerve pain as her brain attempts to re-wire itself. The strangest sensations can cause pain, irritability and confusion. She takes her cocktail of drugs like a real trooper, even administering them herself once I’ve measured them out. She regularly goes under anaesthetic for MRIs and different procedures. She’s on a waiting list for counselling as recently she’s having trouble expressing herself and her emotions and understanding what’s happening to her.

We count our blessings everyday and although she’s never been the same little Annabelle I gave birth to, we are very fortunate she is still here with us.

Update 15th April 2016

Annabelle and her family are now moving on from Post Pals, we would like to wish them all the very best for the future, Annabelle’s Mum said this:

We would like to say the biggest thank you ever to every single person that has taken the time to send all the very lovely messages, letters, cards and gifts to both Annabelle and Aimee during their time with Post Pals. I can assure you every single thing they have received has generated lots of smiles and happiness.

Annabelle now has a friend for life in the name of ‘Spotty’ whom accompanies her when she’s in hospital and to appointments (Thank you to Clare Bray) Both girls also have lots of postcards from around the world which they have found very interesting.

Post Pals will always have a very special place in our heart – Thank you for helping us through a very tough time.

A huge Thankyou to Vikki George too your work is truly inspiring.

Update 12th March 2016

Nothing much has happened this month, our house has been hit by all the horrid coughs, colds and bugs floating about, which combined with all her usual aches, pains and problems didn’t make for a happy Annabelle. She’s also has had to have new glasses which we collected this month.

Update 13th February 2016

This month Annabelle saw her ENT specialist. He advised a tonsillectomy as her tonsils are so big and have been for over three years now. They are causing her problems with her swallow and pain. They will test them when they are taken out to find out what was making them so big. We are now just awaiting the date, she has an appointment in March for the pre-op assessment.
She also had an appointment this month with the ophthalmologist who examined her eyes using the drops (that Annabelle hated having!) and then we saw the consultant who told us there are no big changes with her vision.
Thank you to everyone that has sent the girls post this month.

Update 6th December 2015

Update 5th November 2015

Annabelle’s had her seventh birthday this month and we would like to thank everyone who sent birthday cards and gifts. She also had feeding clinic this month where we discussed aspiration and the pain Annabelle’s been experiencing on swallowing for which we have now got to go to the GP. We’ve had to resort back to medication for the neuropathy (nerve pain) as it’s become quite bad this month.

As always thank you to everyone who has sent post to both Aimee and Annabelle, it means such a lot.

Update 22nd October 2015

Annabelle had a hospital appointment up in London this month with her neurologist. No changes to report, the same problems are still there and there’s no quick fix as it’s just a case of waiting till her brain ‘adjusts’ itself. We saw her MRI results which showed the lesions are still there but have not got worse, apparently this is quite common and he said her brain will probably never totally recover and be how it was before. Annabelle and Aimee say a huge thank you to everyone that has sent post this month and Annabelle says an extra big thank you to everyone who sent birthday post. Thank you all.

Update 12th September 2015

We have nothing much to report this month as there’s been no real change and we are just plodding along.

We are pleased that the weather has finally started to cool down, as the heat exacerbates Annabelle’s symptoms and it means she can now go out for longer periods.

We have had to pay a visit to the optician as she is still complaining of pain in her eyes. They did an eye test but nothing was spotted and so we have to wait for our next ophthalmic appointment.

Thank you to everyone for all the lovely post you have sent. Post always makes a difference to Annabelle and Aimee, but has especially helped this month, due to Annabelle spending a lot of time indoors.

Update 8th August 2015

Annabelle was sad to miss the last few days of her school year before she broke up for summer, as she just wasn’t well enough to go and needed to spend time in bed regaining strength. During the first week of the holiday she developed an infection, on top of her usual problems, that really knocked her. It took weeks for her to recover from it.

We haven’t been out much so far, apart from the odd trip to the corner shop. This because the heat really knocks Annabelle, making her feel ill and lands her back in bed. It’s hard when her friends are out on day trips to the beach, but health always comes first.

Annabelle had hospital again this month for her eyes. They told us she will need a visual field test next visit.

Thanks again to everyone who has sent post to both Annabelle and Aimee as it really does help keep spirits up.

Update 7th July 2015

Not much has really happened this month. The heats exhausts Annabelle and makes her feel sick and delirious, so this month has required a few days off school. Her hypothalamus (part of the brain that controls body temperature) was damaged by her illness and as a result doesn’t function properly, meaning she can easily overheat or get too cold. We have to keep a close eye on what she wears, as she will often wrap up too warm (on the hottest day of the year she had a thermal vest, a pair of tights, leggings, a jumper, and a coat on), which of course can have serious consequences. The hot weather in general causes relentless fatigue and muscle pain and Annabelle will often be found taking regular naps throughout the summer season. We know it’s what she needs to keep going, but she’s been getting annoyed and frustrated with herself, it’s like her brain is telling her to do something but her body can’t.

Thank you for everyone’s kind cards, letters and gifts this month. Lots of love to you all.

Update 6th June 2015

Nothing much has changed really this month. Annabelle’s legs are still giving her grief which sent us back to the doctor but unfortunately there’s nothing they can do and we just have to carry on with her physio programme of exercises. It’s just part and parcel of ADEM and the nerves re-wiring themselves. She had her ENT appointment this month and she still has hearing loss so we have to go back in three months. She also had an optometrist appointment and her eyes are still the same and haven’t got worse, which is great news! We are still awaiting the results of her blood tests regarding coeliac disease too. We had to take a trip back to the speech and language therapist again this month as her swallow is still causing her problems and has come back with a bit of a vengeance these last few weeks. We’re keeping a diary and will go back in a few months.

On a brighter note… myself, daddy, Annabelle, and her little brother, Teddy, had a lovely reunion with the paramedics that came to our aid when she first became ill. It was a touching, albeit emotional, day that we will never forget and it was featured in our local paper.

Thank you to everyone who has sent Annabelle and her sister Aimee post this month, it really helps them and means so much to us. God bless you all.

Update 3rd May 2015

This month Annabelle has been back and forth to the doctors querying Chron’s/coeliac disease as she’s been in a lot of pain with her stomach, has been very lethargic and keeps getting bad bouts of diarrhoea. It’s been hard to keep her spirits up and we are now awaiting test results.

She had her ENT appointment yesterday where the doctor diagnosed her with SSHL (sudden sensorineural hearing loss). She’s going to see her again in a few weeks to re-test and if it hasn’t cleared up she will further refer her on to a specialist. The doctor thinks it may be to do with the nerves having been affected by the encephalitis.

Muscle pain and leg spasms have been catching Annabelle out a lot this month, so much so that she may have to go back on her nerve pain medicine. However, some good news is she finally learnt to swim this week after years of trying! She can’t swim far because of the body weakness and the muscle pains, but she actually swam!

She was called up for some blood tests to check if the anemia had gone but it was still present. She’s eating well so I’m hoping next time she has her bloods done it will have cleared up.

Update 6th April 2015

Firstly, my family and I would like to say a huge thank you to every single person that has very kindly sent post to our Annabelle and Aimee. It really, really does mean so very much to us all.

Annabelle has been suffering with her eyes and stomach this month. She had an appointment with the consultant ophthalmologist who diagnosed her with anisometropic amblyopia. Her eyesight had deteriorated so she gave us a new stronger prescription and we have to continue with the patching and wearing glasses. She has to go back for a field vision test and for normal regular checks with the optician.

Annabelle had also been getting chronic episodes of diarrhoea and pain whilst very lethargic and fatigued. Both lethargy and fatigue are common residual symptoms of ADEM so she was sent for blood tests which came back showing she’s anaemic and our doctor thinks she may also have either Crohn’s or coeliac disease so she is going to be tested for those.

As always she has been a trooper in coping with her leg pains, general aches and pains, numbness and tingling sensations. She described it as her body was ‘down in the dumps’. She has a physio programme that we do daily and we hope it will soon give some relief.

She’s had a hearing test this month which showed her glue ears had returned. We are to go back in three months and if it’s not improved she will either have grommets fitted or hearing aids.

Medical things/gadgets and anything to do with hospitals are still high on Annabelle’s ‘favourite’ things list and every time we are there she’s always asking what the equipment/machines are for! Very inquisitive, we call her doctor Annabelle at home.

Update 17th January 2015

Happy new year to everyone at Post Pals. Firstly my family and I would like to thank everyone that very kindly sent correspondence over Christmas. Both Annabelle and Aimee received some truly lovely and thoughtful gifts, cards and letters, and believe you me when I say everything generated a smile on those girls faces!

Annabelle’s still suffering with muscle spasms and daily aches and pains, especially in her legs. She’s experiencing numbness and tingling throughout her body which we have been told by her neurologist is her brain attempting to ‘re-wire’ itself. She’s trying very hard to regain her bowl and bladder control but it is very hard for her. She’s getting agitated a lot and seems to struggle to ‘calm down’ and have quiet moments but apparently this is all normal of a brain injury.

She’s been a real trooper with her glasses and has been wearing them all day without fuss. At her recent ophthalmic appointment her eyesight had unfortunately deteriorated so she is now wearing an eyepatch. Although she complies with it, she doesn’t like it and struggles with it so it normally results in tears.

Her consultant requested a hearing test for Annabelle which she failed so she’s now been referred to ENT. Her consultant also discovered she’s got asymmetric enlarged tonsils so an eye is being kept on those too. She still has the Thick and Easy thickener in her drinks but her dietician and those she sees at the feeding clinic are happy with her progress so we are hoping to try and wean her off it soon.

Due to the many appointments and time she spends at hospital she seems to have developed a love for all things medical! One of her nurses recently gave her one of their light pens that’s used to check the eyes and she loves it!! Takes it everywhere! Always playing doctors and nurses and checking ours and her dolly’s ‘eye size’ as she calls it! She loves plasters, bandages, BP monitors, she even asked for a hospital gown the other day! She often goes on Google images and looks at the brain and heart and many a question follows! She told us the other day ‘on Monday she wants to be a brain doctor, Tuesday a teacher, Wednesday Missus Maker, Thursday a nurse, and Friday an operation doctor!’ She enjoys medical documentaries and we’ve started recording 24 hours in A&E for her as she seems to find it fascinating and is forever asking about what happened to her. She wants a case of ‘encephalitis’ to be shown (ADEM would be even better but knowing how rare it is I don’t think we’ll see a case of that!) She’s has gone back to asking ‘am I in life’ again on a daily basis and her consultant is looking into perhaps having some counselling for this.

Story written 2014

Alfie was diagnosed with acute lymphoblastic leukaemia (ALL) on 10th February 2014. The genetics of his cells meant that he was put on regimen C which is the strongest form of treatment. Throughout this devastating time he has been a very brave boy and has never complained. He has always fought hard while keeping his ability to amuse everyone he meets with his cheeky personality and constant singing! He is quite simply a superhero! Alfie has always stayed positive with the help of his four sisters, who keep him upbeat with lots of play and fun activities. Plus, even though he has missed a lot of school due to his illness, he has managed a few visits, even just for lunch with his friends to keep up to date what is going on in their lives.

Alfie has responded extremely well to treatment so far and will reach end of treatment on 10/06/2017.

Update 4th January 2017

Alfie has been well over the Christmas period and enjoyed the break from school. He is currently tolerating 125% chemo dose but this does take its toll and he tires quickly.

Again I would like to thank everyone for all the lovely post we have received. Both Alfie and Ruby have been thrilled with all of it, from handmade cards to reindeer revealing magic tricks, to some truly generous gifts. Thank you xx

Update 17th October 2016

Alfie has been in hospital twice this past week with temperature spikes, but only has a cold so has been allowed home. Grace, Ella and Niamh have now been moved on, I wanted to thank you for all the lovely post they have received in the past.

Update 7th July 2016

Alfie has had a few issues this past couple of months with his tummy, due to effects of steroids and also had food poisoning, so was off treatment for a week, but seems to have recovered well.

I just wanted to add an additional thank you for the butterfly garden we received, we had a holiday so only recently got the caterpillars, but we all enjoyed this experience. The whole family got involved and it was lovely to see the butterflies emerge! We released them yesterday on our allotment and Ruby managed to hold one for a few seconds before it flew off.

Update 6th June 2016

Alfie is still doing well apart from a few blips when on steroids!

Update 14th March 2016

Special mention for Alfie’s gift of Lewis Hamilton car and canvas picture, a cushion from Alfie’s cause, the extra post when he was ill – especially the handmade cards and stickers. Also a Star Wars themed parcel from Rachel. Evie’s monthly project parcels for Ruby. And also the Mums parcel for myself – thank you. Alfie has received so many letters and cards and also loved his valentine balloon and card. Alfie seems to have recovered well from his lingering chest infections, so much so that his chemo dose has increased!

Thank you to everyone who has sent post, Alfie and his sisters, love every single thing that they receive and it has helped to put a smile on his face while he has been feeling poorly.

Update 6th January 2016

Alfie got much enjoyment from the toy Advent Calendar, the Guess the Logo game and also decorating the Gingerbread House, the Lego set from Marty Longo, and all the elf parcels, but mainly all the handmade cards and letters that people took time to send. Thank you to everyone who sent something.

Update 5th December 2015

Just wanted to give a special thanks to Evie for Ruby’s monthly project parcel – she was absolutely thrilled with it! Also for Alfie’s as he watched his dinosaur egg hatch with much enthusiasm.

Update 8th November 2015

Alfie is still doing very well, is at school full time and goes to football and dodgeball after school clubs.
Just wanted to mention that we had some really cool Halloween themed post this month, including handmade cards and a fabulous jigsaw, as well as lots of fun activities to do – so thank you to all who send us things.
From Lisa (Alfie’s mum) xx

Update 26th September 2015

Alfie has now started back at school full time and has started plying football in the after school club.

We’d like to say a big thank you to all the people who have sent us post over these few months. We’ve received regular post from Marty Longo and Dottie Dalmatian; a letter from Regan; cards and updates from Hilary and Jem; a WWE card from Karen, Toni and snoopy; a letter from John Dziak from USA with a secret Star Wars message!; postcards for everyone from Michelle; numerous postcards for Grace from Belinda; an Alice card with tea bags for Ella and cards and letters for everyone from Natashja; postcards from Tanya and Essi; birthday cards for Ella and Grace; beautiful handmade cards from Ann; and Ruby also loves her personalised handmade cards and messages from Laura.

Alfie received a fabulous parcel from Wendy with craft items, including glow in the dark solar system and pump rocket. He got a Star Wars pop character which he loves and Hilary and Jem sent him a hand knitted minions hat. Ella received a lovely parcel from Sue Jenkins including butterfly mobile, soap and jewellery. A fabulous parcel was sent from Evie for Ruby with a bag, craft items, some lovely stationery, handmade purse and pencil case, plus her earlier parcel of globes and craft items from Evie. Grace received a lovely butterfly jewellery set and lights from Halima. Ruby had a letter from Maria and Michael and a lovely arts and crafts parcel from Stacey, the artist. The children also received a party pack from Dottie which they all had so much fun with.

Thank you to you all.

Update 24th July 2015

Alfie is doing very well at present and we are hoping he will be going back to school full time in September.

He has joined a cricket club and is also keenly following Hamilton in the Grand Prix!

Thank you for our beautiful paper cuts this month.

Update 10th June 2015

A massive thank you to Katy O’Brine for sending colour in cushions and pens, pillowcase and headbands to the kids, plus a mum book that is paper cut to show a heart design especially for me! Thank you also for the senses gift box from Evie and stickers from Jannine. We received a yuck tin of gruesome things which all the kids loved as there was fake poo! We also had lots of birthday cards for Alfie. Thank you to everybody.

Alfie has now started cricket club after school as tag rugby has finished.

Update 9th May 2015

Alfie is still doing well and has joined tag rugby club after school.

Thank you to Little Rascals nursery for their handmade card and Chryston high school for their cards and letters. Thanks also go to Natashja and Lindsay for the children’s post, to Ann Savage for the beautiful handmade cards, and to Belinda for the updates Grace gets as she loves them. The kids also loved their senses parcels which had some great items including glow sticks, sweets, perfume, books and a fart toy!

Update 10th April 2015

The children received some lovely books this month for the monthly projects theme, including bedtime stories, penguins of Madagascar, lego sticker books and a lego heroes book from Karen and Connor. They also received an xbox 360 game from the Nerd Basement, a box of sweets from Candy Chaos, a brilliant handmade Minecraft creeper from Laura, and some very impressive bath bomb sets which the girls were keen to try out. Alfie also received his personalised Easter egg from Post Pals. We had updates from Belinda and Swedish tradition info from Jenny. We also received letters from students at Park View School in Illinois and our regular cards from Marty Longo and Dottie the Dalmatian. Thank you for all the post that was sent.

Update 23rd March 2015

Thank you for all our post this month and for the personalised Valentine’s cards and their boxes of sunshine, which they all loved receiving. Thanks!

Update 7th February 2015

Our five lovely balloons arrived from Post Pals this month. We also received our Dottie the Dalmatian which the children love! Niamh has had some fluffy socks and stickers, Ella also got some socks, a hot water bottle and dreamcatcher, Grace had some pencils and stickers, Alfie got a blow up toy, and Ruby got a book and some crayon rings – which she was very impressed with! Alfie also loves his chemo duck (which I forgot to mention he got in December!) and he has found his duck very helpful to show his friends where his medicine goes.

Update 24th January 2015

Alfie is still doing well and manages to attend school about three times a week.

The children get so excited when something arrives from Post Pals. It really is humbling that so many people want to send their best wishes. We have received some beautifully handmade Christmas cards, along with lovely letters from Class 108 at Guryong Middle School in Seoul, South Korea. We also had some fantastic letters from students at a high school in Croatia. Finlay Mellor sent Alfie a robot to build and he loved it! Grace also loves her Jacqueline Wilson books. A box of craft from the little crafty bugs company for Christmas which was great. Each of the children also got a parcel – diaries, make up, Lego figures, plus a Minion gun for the bath!

Update 17th December 2014

Alfie is now in the maintenance phase of his treatment, meaning he only has monthly visits to hospital and the rest of his medication is given at home. He appears to be doing well and has managed to attend school a couple of times a week.

We are very impressed with all the cards, letters and messages received so far from Post Pals. There are so many kind people writing to us all as a family as well as individually and it has really cheered us all.

Thank you for the 3D viewer from Kim and Stevie, a green Lego crayon from Toni, Karen and Connor, some lovely letters for Grace with photos from Belinda in Austria, and of course the fantastic balloons from Post Pals! Alfie loved his Batman balloon!

Please note Malachi is allergic to anything with strawberry or kiwi flavourings

Please do not send Halloween themed post to this family

Story written 2014

Malachi was born on the 4th of January 2008 and he was diagnosed at birth with neurofibromatosis type 1 (NF1). Just after his first birthday we had concerns about his development and as both of his brothers have NF we were referred to The Evalina Hospital in London for a MRI scan. Within a week the results showed they had found a tumour on his optic nerve (brain tumour), one of the largest they had seen in a child of his age. He started chemotherapy straight away with the hope of stopping the growth and saving his sight. However, after 18 months of chemo and being a very poorly boy throughout it all, they managed to halt the growth but sadly couldn’t save his sight and he went completely blind without any light perception at the age of 3.

Malachi coped really well and adjusted to life without any sight, he started nursery and really flourished and then moved onto reception in a mainstream school. The year 2013 brought new problems for Malachi as he started to get really sleepy and was complaining of pains in his head. A CT scan revealed he had enlarged ventricles and hydrocephalus was diagnosed. He had a ventriculoperitoneal shunt (VP shunt) fitted in the March. They are supposed to be very reliable but since then he has had two failures resulting in him going through two more lots of brain surgery. Thankfully he is under an amazing surgeon and this third shunt seems to have settled down well now.

Malachi recently had another planned MRI on his brain tumour (July 2014) and this has shown that his tumour has started to grow again. They are going to scan him again in September and then decide on the next course of action.

Update 24th November 2022

Malachi has had a tough time lately and has recently been signed off of school due to his mental health and PTSD symptoms he is very unhappy and lonely, we are at the moment trying to move his schooling but this means boarding about 3 hours away from home as this is now the only option available to him, it’s so sad that blindness is a condition which people don’t really understand or accept.

Malachi has had more hospital admissions due to his shunt playing up which has caused a lot of extra stress and anxiety for him and the family.

We are looking forward to Christmas and hoping that this will perk him up and bring some joy to the family as we are all struggling at the moment.

Update 21st June 2021

Malachi started his new school and has fitted in well and seems more settled than he has ever been in a school which is really good.

He has been struggling with absent seizures so his drugs have had to be increased.

Malachi’s brain tumour  continues to stay stable which we thank God for every day.

Malachi will be doing the London slide fundraiser for post pals as he is very keen on raising funds for postpals.

Update 20th August 2020

Malachi had an MRI brain scan on his brain tumour to see if was behaving in July and we found out it was stable at this time.
Malachi suffers from depression and anxiety and the Pandemic has escalated this so he is going to be having 14 CBT therapy sessions starting next month, Malachi feels very lonely most of the time as he has no friends at school, Post pals is where he feels most accepted!
Malachi’s Epilepsy is a little bit up and down so he has recently had a 72hr EEG and we are waiting to hear the results of this.

Update 2nd October 2019

Sadly Malachi’s last brain MRI scan showed growth and they are deciding if treatment will need to be started again, Chemotherapy can be very stressful and he is very upset by the prospect.

He also has had several admissions by emergency ambulance due to progression of tumour symptoms.

Malachi’s older brother who used to be a sibling pal and is now 19 was diagnosed last week with a brain tumour, so this has caused great stress and worry to us all.

Malachi started secondary school in September and is loving it and has finally started to make friends.

Update 26th March 2019

Malachi started his new school back in September and is doing really well there, it has a visual impaired unit so he is no longer the only visually impaired child in the school, this has made a huge difference in his mood and anxiety which he was suffering with so badly.

His tumour remains stable at this time and we are now looking at him starting secondary school in Surrey, a little way away from our home but hopefully he will get a taxi to and from school each day.

Thank you to everyone who writes and sends post it really does make a big difference to both of them so Thank you xx

Update 1st August 2018

Malachi has been off school for a long time with mental health and suicidal ideation, as he cannot come to terms with having no sight. This has caused him to have more fluid filled sacks and sadly this cannot be operated on as the danger is too high, so he has long periods with agitation and bad headaches while his shunt fails to work intermittently.
Malachi will be starting a new school as of September where he will be with other blind children, so we pray this will help with his mental health.

Update 24th January 2018

Malachi has been sleeping more and more and the hospital say it’s what to be expected. Since Christmas Malachi has been having involuntary twitching and jerky movements in his left leg and after yesterday’s appointment we have mixed emotions. We are very pleased the new condition Malachi has developed called clonus is not due to a new tumour on his spinal chord, which is what they were thinking, but that it is due to the tumour and surgeries on his brain which has caused brain damage to the area that dictates your leg movement & leg reflexes!

Clonus can develop if you have surgery to the brain and it injures the brain’s motor nerve cells — cells that control body movements — or their wires as they descend toward the spinal cord. Similarly, brain tumors that are located near the brain’s motor nerve cells or wires, or cause swelling in these areas, can cause clonus. In these cases, a tumor on one side of the brain will cause weakness and clonus on the opposite side of the body.

Just another hurdle we face but we will not be beaten, this just makes us more determined to live life to the full! ❤️

Update 9th October 2017

Malachi is going to be starting counselling soon as he has been really struggling with his loss of sight, but he really enjoyed climbing the O2 to raise money for Chessington and loved every minute of it.

Update 23rd August 2017

Malachi was admitted to Bristol HDU last week with further complications to his shunt and hydrocephalus which now means we are waiting for more surgery, this is very tiring for Malachi and also has impacted on the whole family. Thank you for everyone’s support

Update 21st June 2017

Malachi continues to need mental health help in London as he has become very sad and depressed regarding the fact he is blind. He also is still having fluid filled cfs sacks appear on his head where his shunt is fitted, he will now eventually need more brain surgery to correct this as the fluid is brain fluid which keeps leaking through the skull.

Malachi’s Brain tumour is stable for now so this is good news, however the tumour Means he has started early puberty and he now has had to start a stronger course of treatment for his endocrine as the injections he was having have not been working as well as they wanted them to.

Update 30th April 2017

Malachi is suffering still with mental health issues but has this week been awarded funding for CAMHS help.

Malachi continues to have problems with fluid filled sacks on his brain and next week will be seeing his surgeon to decide when he will need further brain surgery. He has already had 13 in the last 2 years so as you can imagine he’s a little apprehensive about another.

The fluid is pressure of brain fluid which is leaking from the shunt in his brain and causing pressure and this shows in the form of depression, suicidal thoughts and agitation. Malachi becomes very sleepy and this also increases his seizures.

Malachi’s post really cheers him up and helps us all smile through the difficult times.

Update 14th March 2017

A quick update as it’s been a very harrowing few days. As you know Malachi had to be admitted yesterday to our local hospital and after a CT scan showing the swelling around his shunt it has been passed to Kings surgical team to decide what the next steps will be to rectify Malachi’s latest health worries!

The Neuro team are in meeting’s to decide weather he needs any surgical intervention or not, we are currently at home as we felt it best to look after him here where he will feel more normal and we can give him more normality as his mental health isn’t good at the moment.

He continues to say he wants to die which is very distressing and they are looking into getting him some help.

Thank you to everyone who has sent Malachi emails or letters it really has helped.

Update 15th February 2017

Malachi has been very depressed and has been referred to the mental health team, but they have not been able to help him as they say his issues are too complex!
It all started when in October they told us in front of him that his tumour had shrunk, but this was not the case and they had indeed made a mistake. This has devastated Malachi who doesn’t now want to carry on! He keeps saying he wants to be normal, but with no vision at all and having no light perception this is a wish that obviously won’t come true. We as a family feel like we are on a rollercoaster and Malachi is very upset.
He also has started early puberty which is proving to be very difficult and his endocrine doctor has started him on a large dose of monthly hormone injections to hopefully halt the problems he is having.
We really appreciate all your post and letters of support to him, thank you.

Update 6th October 2016

We’ve had a small tumour shrinkage, yay! But I’m on an emotional rollercoaster, it’s fair to say!
Yesterday we went from worry and nerves at waiting for the scan results to elation and excitement at the shrinkage, then we plummeted to an all time low which I didn’t think was possible after such good news!

Malachi’s mental health dropped to an all time low. He thought in his little mind if the tumour was to ever shrink he would get his eyesight back. Oh how I wish this was true. When he didn’t, he broke down. He’s devastated!

My boy has been so brave and courageous in his fight and we know the tumour is still there, albeit a little smaller, and we are so thankful for this but for malachi this doesn’t mean it’s all gone away. He still has his tumour, hydrocephalus and epilepsy, but to him all these things are secondary to him, he wants to see the world and see it with his eyes!

It’s so unfair. I feel angry. I feel desperate that I can’t do anything to help him get what he really wants – his eyes!

He has been given an urgent referral to CAMHS, which is the local mental health team as he keeps saying he now wants to die, saying he wants to take it all away. It’s so unfair that he can’t see the world. As his mum it feels unfair. He’s never seen me. I hate that he misses out on so many normal things like colouring, climbing unaided, reading, running towards something, looking at the sea, the birds, the grass. It’s just so cruel. I hate cancer!

Since 2am this morning, 6 October, he has stated over and over again that he wants to die. I’m exhausted and I’m shattered. As his mum I feel heartbroken. I feel lost. I feel desperately lonely. Life has never been the same since this nasty ugly tumour took hold of my precious child. I feel so totally lost for him.

Update 7th September 2016

Malachi had his 13th brain op at the end of July which caused Malachi to be very depressed and sad, he has now been referred to Camhs as he keeps wanting to die bless him obviously this has been very stressful but hopefully counselling will help him. He’s in constant pain with severe pressure headaches as his shunt keeps blocking but he is really looking forward to meeting everyone at chessington soon.

Thank you for everything you do to help make our kiddies smile again.

Update 7th July 2016

Was lovely to be at the party this year and so nice meeting everyone. The whole family loved it, even our son, Samuel, with Aspergers. He usually finds parties quite hard to handle but we all went home smiling.

Update 16th May 2016

Malachi is suffering with more and more seizures and is having headaches so has been in hospital.
His brain scan showed, again, enhancement but no growth!

Update 12th April 2016

Malachi is suffering from headaches and was taken into Kings where he underwent CT scans, etc. They feel it may be the tumour. He is having an urgent MRI and bloods, etc. tomorrow. Malachi is very worried and he described himself as being sad.

Update 22nd January 2016

Malachi’s tumour has enhanced again and his seizure activity is getting worse. He is having loads of endocrine tests at the moment so is a little fed up with hospitals, bless him.

All of my other children Zech, Samuel & Ayesha have now been referred to children’s mental health team as they are struggling with everything.

Update 22nd October 2015

Malachi had his MRI this month which showed enhancement of his tumour. He has been very poorly and lethargic, sleeping all the day and he was rushed into hospital and ended up in HDU. He is now back home but could do with some extra smiles as life has been very disruptive for him with the uncertainty of what will now need to happen, such as chemo or possible debulk if it gets any bigger!

Malachi continues to try and boost his brothers and sister who are really struggling at the moment with us always needing to be in hospital or at appointments.

Update 6th July 2015

Malachi continues to need constant help and is having seizures, though coping well. Malachi’s tumour was stable at the last scan but they are to re-scan in September and see if it’s still the same.

Thank you for your continued support.

Update 6th May 2015

A big thank you to Skye for writing to Malachi, he loves hearing from her! He loved his good luck Tiki from New Zealand too.

Update 10th April 2015

The operation went really well, even though it was longer than normal, but they had to replace the whole shunt system. He had stomach surgery too, bless him. While under they also did the other correctional surgery that was needed!

Afterwards he started having fits so was rushed down for a CT scan to check for bleeds but thankfully it was ok. They are not sure what is causing them, so we are waiting to see a Neuro doctor this morning. He continues to be in pain today so is on morphine and very out of it, bless him. He is fitting still now, it seems to be constant, so they have ordered an urgent EEG!

Our other son’s wedding is tomorrow so please pray we make it! In recovery when he found out he’d had stomach surgery as well his response wasn’t: ‘Oh it hurts’ or ‘Why?’ It was just concern over not being able to have a bath before his brother’s wedding! His exact words: “Great I’ve got to walk down the aisle dirty now!” He never ceases to make me smile!

Thanks again for your support and prayers!

Update 9th April 2015

Malachi went for his appointment in Guy’s this morning and had some sort of seizure and vomited whilst in the consultation. It was decided it was his shunt again, so he was brought to King’s and we are once again in Lion ward!

Update 22nd March 2015

Malachi has been in hospital most of this year and has needed seven brain surgeries. This month we have been told the sad news his tumour has grown and another one has appeared and spread into the septum of the brain which is causing hydrocephalus and shunt failures. Malachi’s consultants have said they cannot operate (which they would normally do) as his is in a place where if they operated on it he would be completely brain damaged and they said he would have no quality of life. We are monitoring it at the moment and we may have to start chemo at some point in the future!

Thank you for the children’s post, especially the lovely balloons and Malachi’s regular letters from Skye, Marty Longo, and a school.

Thank you again for all the hard work you put in to this charity because it really has helped my kids and the smiles it creates have been amazing.

Update 14th December 2014

Malachi has been in hospital for emergency brain surgery. He had another shunt blockage so had emergency surgery, only to find out when he was under that he had a bleed to the brain. They put in an EVD external drain and we now may be in for Christmas as he will need more complex shunt surgery before we are allowed out.

Malachi loved the balloon he received that was delivered to the ward, thank you.

Being a part of Post Pals has brought a lot of smiles to our children’s faces.

Update 8th November 2014

We are loving Post Pals, Malachi gets so excited when the postman posts the post through the letter box. Today he received some fantastic stickers from Australia and he straight away asked for a note pad and started sticking his stickers in. He said “this is amazing mummy, I’m going to make a happy book to make me happy when I feel sad”. So he now has his own sticker happy book! Thank you Post Pals as the smile on his face is amazing and they were foam stickers which meant he could feel them!

Story written 2014

Wesley was diagnosed with Charcot-Marie-Tooth, a hereditary motor and sensory neuropathy, at the age of 12. Looking back, he had always shown symptoms – high arches, feet turning inwards etc. He was a ‘clumsy’ child and found it difficult to run and do the things that other children seemed to do so easily. Doctors and physiotherapists put it down to over flexible joints and said he’d grow out of it. Wesley took everything in his stride – despite being teased throughout his school life, he always tried his best in everything he did and enjoyed life to the full. In his fifth year at primary, he suffered a soft tissue injury to his lower back. He was hospitalised for a time and when he returned to school he was using a walking frame to get around. Although he was eventually able to walk unaided, the pain never really went away. Nobody knew why, but still he carried on! The school awarded him a prize for ‘Endeavour under difficult circumstances’ and he went on to achieve high grades in primary education. In his final year at primary, he was selected to take part in an exchange trip to Germany with ten other students. Although he didn’t find it easy, he enjoyed experiences such as ice skating, sledge dog racing and spent time in a German school. He was awarded a certificate for the ‘best joker and the person with the most falls!’. He was an inspiration to everyone and it was the best experience of his life.

We had noticed that his feet were turning in more and he was tripping more often, but as always he took it in his stride. It was part of him. Like all kids, the transition to secondary school was a daunting but exciting time for Wesley. He settled in well in his first two weeks but the extra strain of the walk to school and the huge building started taking its toll. He began to fall daily, his legs just ‘giving way’ until it got to the stage where he couldn’t walk more than a few steps without problems. He went to the GP, had several trips to A&E and was then admitted to hospital five times in two months. Each time he had fallen there was no injury but the pain didn’t go away. Around this time, we became aware of Charcot-Marie-Tooth. It ran in our family, but no-one had thought to mention it until now. When I approached the GP he said that it was unlikely, but a blood test confirmed CMT type 1. He was sent for physio, was given a wheelchair for use in school for his own safety, and fitted with AFOs which helped him to walk with crutches. Over the next year Wesley continued the best he could. Every fall meant x-rays which showed no injury, yet the pain told a different story. It began to affect both his legs, his lower back and then his hand. He would have times when the feeling in his legs would just go altogether and he couldn’t move them at all. It didn’t sound like the normal effect of CMT but then everyone is different. What else could it be?

Earlier this year, Wesley was doing quite well until he took a slight knock to his upper back. The pain was excruciating but again, x-rays showed nothing. After two weeks in hospital, with no real improvement he was sent home, confined to his bed and with me becoming a full time carer. Wesley was due to be seen by a visiting neurologist in his twice yearly CMT clinic. We prayed that he would be able to shed some light on what was going on. When the day came, he was desperate for answers, but eight paramedics couldn’t get him out of the house. His whole body was suffering from severe muscle spams and causing him the worst pain he had ever experienced. The slightest touch had him in tears. In the end I had to go to the appointment on my own, desperate for someone to help him. Within five minutes the neurologist gave a diagnosis – as well as CMT he was showing classic symptoms of complex regional pain syndrome type 1. It is a very difficult illness to treat – normal pain meds don’t touch it and the effects can be life changing. Wesley’s nerves were in overdrive, sending extreme pain signal to the brain, even though there was no injury. There is no cure. A CRPS sufferer can only learn to life through the pain and hope that intense treatment will lead to remission. Wesley has currently been in hospital in Cornwall for over sic weeks. The CRPS has spread to both legs, both arms and his back. The medical staff here don’t know much about the condition. They can only help on a daily basis, keeping him safe and doing their best to make him as comfortable as possible. We have been given a date (30th of June) for an assessment at a specialist hospital in Bath. Hopefully he will be able to take part in one of their intensive rehab programs which will teach him to move his limbs again and be able to get back to some kind of normality. The key is to stay positive and to believe that he can do it!

Wesley is a strong boy. Whatever difficulty or pain he faces, he always manages to pick himself up emotionally and keep going. As there is nothing else that can be done until his referral to Bath, his consultant is hoping that with physio and psychological input he will be able to come home for a while and be with his family. In the meantime, we will continue to try and keep his spirits up and keep him smiling. Ultimately he is going to have to start moving his limbs with help, as although he believes that the pain is unbearable (The MacGill Pain index show CRPS pain being the worst – above child birth and many other painful conditions), it is his only hope.

Update 29th January 2016

Thank you to EVERYONE who has sent cards and gifts. Especially those who took the time to make hand made cards over Christmas – they were all amazing. We haven’t been able to thank everyone individually as yet, but want you to know that each and every one brings a smile and is much appreciated.

Thank you also to The Extra Smiles Team and Cornwall-based quilting group who delivered the most amazing quilt in time for Christmas! The amount of work that went into it and the thought, involving Wesley’s favourite colours and themes was unbelievable and it’s now one of his most prized possessions!

Wesley is doing well and his CRPS is currently under control. He took delivery of his first powerchair today, which will help to give him some independence and enable him to return to school. CMT wise, he seems to be losing some strength and being unable to walk is taking some getting used to. As always though he is positive and determined to make the best of things.

Wesley’s sister Lowenna has been having a hard time as she is starting to suffer some symptoms of CMT and is experiencing a lot of pain and some difficulty walking. She is currently under physio and has an appointment to discuss aids which will hopefully help her. It’s a worrying time for her and for Wes, who loves her to bits!

Update 7th November 2015

Sorry for not updating for a while. Wesley and his siblings get so much joy from Post Pals and we would all like to thank you so much for your continued support.

Back in May, Wesley was suffering from dislocations in his knees due to hypermobility and was having physio etc to try and prevent further problems. We were also in the process of fundraising for a powerchair and were due to have adaptions done to the home to give him back some much needed independence.

Wesley tried very hard with his physio, but the problem continued every time he tried to move either leg. Back in July we had an appointment with a knee surgeon. Despite his best efforts, the physio didn’t seem to be having much affect and his leg braces weren’t doing much either. X-rays basically showed that his knee caps aren’t where they should be, as well as being very hypermobile. Surgery later on may have been an option, but due to the fact that he has CRPS, any surgery carries a huge risk of the condition being aggravated and there is only a slim chance surgery would help anyway. Being told that there was nothing they could do was hard (for me at least – I cried myself to sleep that night), but Wesley took it on the chin and came to the conclusion that at least he knows and being in a wheelchair ain’t that bad! We are hoping to travel to Bristol Children’s Hospital for assessment later this month. Maybe they will have some ideas?

Wesley’s CRPS remains ‘under control’ right now. Wesley says the pain is just as bad, but he is learning to live with it and he’s determined not to let it get him down. November is CRPS awareness month and he has been using his design skills and the power of the Internet to spread the word about the condition. He has regular contact with some young people in America who have CRPS and they are a great support to each other. He’s determined that one day we will visit and he will get to meet his new friends!

His CMT seems to slowly be progressing and is causing a lot of weakness in his hands. He exercises and stretches daily to try and keep his feet and ankles supple and to slow any muscle wasting that could occur.

As yet, we are still fighting a battle to have an outdoor lift installed. It was due to go in in February, then was delayed until July (just before the summer holidays). Unfortunately, this never happened so the summer holidays were problematic and meant a lot of time was spent indoors. The council did provide a stair climber, which enables me to get him out when the weather is good – but we live in Cornwall! We made the most of good weather when we could and had some fun times, but when the weather is bad (which it is now) we’re pretty much stuck! We were all very excited about the start of the new school term! Wesley took his options and is working hard towards his GCSEs. Lowenna started a new school which she loves, and Tegan couldn’t wait to get back! We had a new date for the lift installation of 7th September, which meant we would have all three children enjoying school for the first time in three years! I planned to start training again and looking at getting back to part-time work. The 7th of September came and the lift was brought down from Sheffield – only to discover that it hadn’t been measured properly and had to be taken back. At this point, there is still no news.

Wesley is amazing at staying positive. He is top of his class, studying graphic design, catering and computing, but has only spent a handful of days actually in school. He has also missed out on family days out, being able to visit his family in Swindon, but still remains positive! How he does it I’ll never know. I couldn’t be more proud of him.

So, lets look at the positives! Through support of amazing family and friends we managed to reach our fundraising target for his powerchair! We had some great fun along the way – sponsored zip wires, coasteering, crepe making and an awesome family fun day which saw over 100 people coming to our local community centre for a day of activities! Wes was able to attend this one, dressed as Venom (the theme was super heroes, of course!) There was a visit from Elsa and Anna, which Tegan loved! Local charities including CAAP (Cornwall Accessible Activities Program) had stalls which meant we were able to raise funds for others too, which was a great feeling! The community really pulled together. Towards the end of our fundraising, the NHS agreed to reassess him and finally agreed that they could also provide help, which made up the last of the money needed. Until the famous lift is installed, we are unable to order the chair, as we can’t get it in the house – but as soon as it’s done we’re away!

Wesley has also been provided amazing opportunities through another local organisation – Activ8! We first met them three years ago when Wesley and his sister did the ‘Big Santa Fun Run’ to raise money for CMT UK and they put him on a waiting list. He has started a two year course, where he and six other young people with disabilities get to go away for a weekend once a month. When he is stuck in the house so much this a massive thing for him! They have provided transport and helped him to get out of the house with carers and support workers – it has been amazing! Lowenna and Tegan also benefit from this as it means for one weekend a month they have our full attention and we have done some great things – we’ve been to a Status Quo concert, visited Banksy’s Dismaland … fun times.

Also, through Activ8 he has joined a panel of young people on the SEN board, visiting County Hall and advocating on a range of topics that he is very passionate about. Again, transport and everything is provided through the charity. The last meeting was about wheelchair services and Wesley sure made an impression! He seems to have a knack for public speaking and isn’t scared to speak his mind and be a voice for others! Hopefully, the next update will include having the new lift, ordering his wheelchair and looking forward to the new year! Until then, we will look forward to planning a family christmas. Thanks again to everyone at Post Pals and all of you who have sent cards and gifts. Love and hugs to you all x

Update 1st May 2015

Since getting Wesley’s CRPS symptoms more under control and getting him back on his feet, he is now experiencing difficult times due to hyper-mobility. Every time he tries to bear any weight on his feet, both knee caps are now popping out of place! So, six weeks in leg braces, legs fully extended and being adjusted every two weeks, and also physio, to see if he can build up enough strength to prevent it from happening. If not, we will be looking at possible surgery.

At the moment, he is unable to use his newly installed stairlift, so is confined to his bed. On a brighter note though, they have started work installing a wheelchair lift outside the house and plans are in full swing for some exciting fundraising events to help him get a powered chair!

Thank you for your continued support. Your thoughtful letters and gifts mean so much. We will get around to replying, but it may take a while. In the meantime we will keep you posted!

Update 4th April 2015

The past few months has been like a roller coaster of ups and downs! Wesley has been progressing well since coming out of hospital last year. His determination has seen him return to school part time and he continues to do amazingly in all subjects. He has been deciding on his options for his GCSE years and wants to study computing and graphic design. We are lucky that his school are so supportive and what ever he is going through they do their very best to help him achieve his goals.
Wesley’s CRPS seems to be pretty well under control – the daily pain is still very much there but he is learning to take it as it comes.

His latest set back has been since he has begun to be more active and walk around more using his AFOs. He dislocated his knee, tearing the tendons and causing some damage. It seems that he is hyper-mobile (which we have known for some time) which means this is likely to reoccur, so six weeks in a leg brace and then an appointment with a knee surgeon to see what can be done.

Wesley and his sisters received some amazing post while he was in hospital last week – it couldn’t have come at a better time. Thank you so much!

We are in the process of fundraising for Wesley to have an electric wheelchair to help him around school and to enable him to get out and about a bit more. The support we have had from family and friends has been amazing and they’re arranging some exciting events in the coming months. I’m sure we will soon have lots to write about!

Thank you to everyone who works so hard to keep Post Pals running and to everyone who sends post – it makes such a huge difference to peoples lives and we can’t thank you enough.

Update 18th October 2014

Since coming out of hospital so much has happened! Wesley is finally getting the help and support he needs with regards to adaptions to our new home, home tutors and support workers who visit to give us some time out, and Wesley some much needed 1 to 1 time.

Health wise things are still tough. He has been managing to deal with his pain more effectively and we’re sure this has a lot to do with being at home and around his family and friends. His spasms are a lot less frequent but he has been suffering from seizures, which can be triggered by the slightest knock to his legs. These can be very scary, particularly for him as he is aware but loses all control, feeling in his body, ability to talk or communicate, and then blacks out. All we can do is make sure he’s safe and leave him to come round. So far his movement has returned within an hour or so. We are pretty sure that these are non-epileptic and a reaction to sensory overload but he will be having an EEG and tests this month to confirm this.

Despite this, it is always so important to focus on the good bits and his strength and determination make us so proud! In the past two weeks he has managed some time in school which has been a huge boost and his grades are amazing (despite missing over six months of schooling).

Every post card, gift, message, helps to lift his spirits and with his condition this is SO important, so thank you again Post Pals. We can’t thank our Post Pals enough for all the lovely messages and gifts. Thank you to each and every one of you and those who do such an amazing job of running the charity and making such a difference during difficult times.

Update 13th September 2014

Just want to thank everyone who has been sending post to Wesley, Tegan and Lowenna! It really helps brighten up their day! Wes has had lots of ups and downs… he’s slowly getting some time in school and making progress, but the post plays a big part in keeping him smiling and positive!

Tegan has been making cards and things to send to people – especially her favourite Post Pal Melissa. She was very happy to have a little photo of her and some lovely things for her new wall. Tegan’s birthday is coming up too, and by the looks of it she’s going to have lots of extra cards and pressies this year!

This group is fantastic and I am really looking forward to having some time to post Tigi’s bits and send some post myself. Thank you so much everyone.

Update 1st August 2014

So much has happened since I last wrote an update. Wesley had been allowed home (staying with family as our house wasn’t suitable) and was unable to use his limbs or handle any kind of touch without his body going into spasm.

Well, I am pleased to report that we exchanged houses and we were able to move into the house Wesley had been staying in and be a family again! We are settling in well and finally have a great support team around us, enabling Wes to have more interaction and independence. He has been doing amazingly with his school work (even though he has missed a whole year) and the best bit of all is he has full use of his limbs again! Having a hospital bed in our new living room has made a massive difference and we are looking at making adaptions for the future. Thanks to new splints he is able to walk a bit around the house and was able to have his first bath in two years! The spasms have calmed right down too which is making his life a lot easier and he is coping well with his pain – he’s determined not to let anything hold him back!

We are certain that his improvement is down to being at home and having some normality back! He is more confident, positive and Wesley’s Post Pals have had a huge part to play in that!

Thank you from Wesley, Lowenna and Tegan as they are loving the support and smiles they are receiving from Post Pals. Hopefully things are on the up and we look forward to bringing more positive news very soon.

Update 1st June 2014

After 11 weeks in hospital with severe CRPS symptoms, Wesley was very happy to be allowed home! It has been a tough time for all of us – Wesley is currently unable to use his legs or his right arm and the slightest touch (even from clothing) leaves him in severe pain. When he was first admitted, he was getting all over body spasms – these are now less frequent as he is learning to control them through breathing and sheer determination, however it does occasionally lead to him being unable to use his arms at all for a time. The plan was to send him to The National Hospital in Bath for assessment and treatment, but it was decided that this would be far too traumatic as it would involve a six hour round trip! Instead, we had a two hour conference call during which we spoke about symptoms and how it was effecting not only Wes but the entire family. He is so scared – although remission can be achieved in many cases through a combination of physio, OT and psychological therapy, his nerves are in overdrive, sending constant pain signals to the brain. He knows that he will need to start moving the affected limbs ASAP. for the best result, but for Wesley this makes the pain so much worse, as does the anxiety and stress. On the other hand, not moving will also make the pain worse and lead to complications. The Bath team have set up a treatment plan and will be visiting Cornwall in the near future to work with his care team – it was decided that the best thing for him would be to send him home, to be with friends and family and to get some normality back in his life. There is not much that can be done in hospital – pain meds don’t help and he is more vulnerable to being knocked, setting off spasms and picking up bugs. Being at home should give him the motivation and strength to face the journey ahead.

For the past two years we have been fighting to get adaptions or a suitable property for Wesley without leaving our home town, our support network, school etc. The home we are currently in can’t be adapted at all due to poor access to the property and doesn’t have the room we need to care for him. So along came another plan – a mutual exchange with family members who live just 5 doors away and have supported us no end in recent months! The move is underway with just some forms to sign and waiting for an actual moving date. In the meantime it was suggested by the family that Wesley stay with them, so that he could come ‘home’ and not have to worry about being moved again when the time comes. Last Friday, a new hospital bed was delivered and support finally put in place after two long years and he came home. Apart from having to remove a window to get him into the house it was a relatively quick transfer – the paramedics were amazing and the welcome home banners, cake that his cousins had made, and a pile of post from Post Pals made him a very happy young man. We have a long way to go and it’s not going to be easy but for now we’re just happy to have him home. We are so lucky to have such supportive friends and family around us. Without them, it wouldn’t have been possible.

Thank you for all the welcome cards received during Wesley’s first month as a Post Pal! Such a lovely warm welcome which really put a smile on Wesley’s and his sisters’ faces during a really hard month! Tegan especially loved receiving a home made card from a 9 year old girl in Scotland. She was so excited! Wesley received a lovely letter from Germany from a Post Pal who shared lots in common. It brought back some lovely memories of his time spent in Germany in his last year at primary school and he couldn’t wait to write back! Wesley, Tegan and Lowenna, were surprised to receive some lovely and thoughtful gifts, which were kept as a welcome home when he came out of hospital! Tegan spent ages colouring princesses, while Lowenna turned her hand to making friendship bands and Wesley has spent hours doing puzzles and learning to draw Marvel characters – perfect for a young man who so enjoys his art and comics! We can’t thank you all enough.

Being a part of Post Pals has already been a huge boost for the whole family! A simple card can go such a long way and the kids were so overwhelmed they have started to make cards and gifts to send to other children too! Thank you so much.

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 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 .

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 2014

Dion’s heart condition was diagnosed at my detailed scan, where they said he would need three stages of operations which would help him but never cure him.

Dion’s first operation was done at a day old and he spent four weeks at Birmingham Children’s hospital before he was allowed home. He had only been home a couple of months when he got septicemia and a blood clot in his heart, which required another operation.

Dion’s second stage operation was done when he was around six months old. This went to plan and he was home a few weeks later and continued to do well. He had to undergo several cardiac catheters (camera to look at his heart) every so often to check things was going ok.

Around the age of 1 he had to have another operation to try and widen his aortic arch and after several attempts it worked.

Dion’s fifth operation was in 2007 he was aged 7. This was the third stage called a Fontan and we were in hospital for six weeks due to him needing to go on a special diet. He was home for a month and needed to go back in over Christmas 2007 due to a build up of fluid around his heart.

As of January 2014, Dion is doing as well as he can. Doctors have confirmed he now has heart block and will require a pacemaker within six months. Dion does not let his heart issues get him down, he tries to get on with things as much as he can.

Update 6th October 2016

Myself, Dion and Kaleb would like to say a massive thank you for everything and everybody’s kindness. We have decided to move on to let another little one have some happy post. Dion is doing OK at the moment and although he is due a pacemaker, we have no idea when as we have to work very slowly with Dion, but thank you from the bottom of our hearts.

Update 6th August 2016

Dion has been struggling lately to keep up with his friends, he is sick if he over does things. We have several appointments in August, all to do with his heart and also his weight/ height.  Dion has just recently started hormone treatment in the hope this will help him grow etc.

Update 11th July 2016

Dion’s MRI results came back and although they have said something’s slightly lower than last year, everything else is how it should be. Dion has just recently started his hormone treatment, he was so excited, as he really wants to be taller, like his friends. Many thanks to everyone for the boys gifts/letters postcards etc.

Update 2nd June 2o16

Dion has had a few hospital appointments and they are still trying all sorts of supplements to help with his weight. Dion is due an MRI of his heart next week, so will update once I know more.

Update 7th February 2016

Dion has been unwell recently with a bad cold and cough which put him in hospital for a day as he was being sick a lot. He is also sleeping a lot, so I have tried to get his cardiac check brought forward.

Update 3rd January 2016

Dion, Kaleb and I would love to say thank you so much to everybody for all their post. Dion has had a few episodes over Christmas where his heart rate has been really slow, this really knocks him down for a few days. His weight still remains an issue and dietitians have said to just feed full fat milks, cheese etc as he hates all the special drinks.

Update 9th November 2015

Dion has been doing well and is due a scan on his stomach in next two weeks as having a few issues.  Many thanks to everyone for the boys’ post.

Update 13th October 2015

Dion has had a good stable few months, although he is experiencing a lot of headaches and no one seems to know why yet. A big thank you to everyone.

Update 13th August 2015

Kaleb has been in hospital and had an operation recently so it’s been very busy here. Dion is doing well, though he recently had a 24 hour ECG and we’re waiting on the results at the moment.

A big thank you to everyone who sends post to the boys. Thanks to Post Pals for everything they do.

Update 8th July 2015

Dion had his yearly check up this month where all went well and his consultant was pleased with how his heart is doing. He has to have another 24 hour heart monitor in a few weeks and there is still concern over his weight, but this has been a problem for a long time now.

Many thanks for all the post sent to the boys and a big thank you to the WLPC group for our lovely paper cuts.

Update 2nd June 2015

Dion has been complaining a lot lately of chest pains, so we are counting down the days until we see the consultant, other wise he has been quite well.

A big thank you to everyone that sends the boys post, it is gratefully received and makes their day.

Update 1st May 2015

Dion is doing ok heart wise but is still struggling with his weight gain and height. He has had several appointments regarding this and at the moment they are keeping a very close eye on him. He is due a heart checkup soon so I will update with how it goes.

Update 2nd March 2015

Dion has been doing okay lately, he still gets very tired quickly so is having to take regular rests though. We recently had a stay at the hospice for some respite, which we all love.

Update 6th January 2015

Dion has been doing well. He has had the odd cold etc, which knocks him about for a few days though. Dion has to undergo another exercise test at the end of the month to keep an eye on his heart block.

Many thanks to everybody who sent Dion and Kaleb Christmas presents and cards, they were over the moon with everything and can’t thank everyone enough!

Update 6th November 2014

Dion has been doing well. He has recently undergone an MRI to get a better view of his heart and we are waiting on results. The cold is starting to affect him though and we do dread this time of year.

We would like to thank everyone for Dion and Kaleb’s post, you certainly have all made them smile.

Update 8th September 2014

Heart wise, Dion is doing well. However, he is still losing weight and not gaining anything at all. The hospital want to do more tests if this is still happened when he’s weighed in November/December time.

We’d like to say thank you so much to everyone who has sent post.

Update 31st July 2014

Dion has been doing as well as expected from his heart point of view. He is now on a special high calorie drink to help boost his weight though as he has dropped off the chart.

Dion and Kaleb would like to say thank you to everyone for their kind letters, cards, gifts etc. They will try to write some replies but this could take a while.

Update 8th July 2014

Dion has been doing well the last month and is enjoying all his lovely post. He has now had to start a special diet to help him gain some weight.

Update 1st June 2014

As of May 2014 Dion has been doing ok. He is due to see a dietician next month as he is losing weight. Due to all his fears Dion refuses any blood tests to find out whats going on.

Would like to say thank you to everyone that has sent post to Dion and Kaleb. To see their faces light up when they receive mail is magical. Thank you.