Story written 2014

Finley was diagnosed with ALL Leukaemia in April 2013 after numerous tests to see why his lymph nodes were swollen. Chemotherapy soon followed and the frequent hospital admissions and visits began. After his first block of treatment we were told that Finley was high risk and his treatment would have to be further intensified for another 10 weeks. At the end of the 10 weeks Finley’s bone marrow results came back as high risk again meaning chemotherapy alone was not going to cure him. His only hope of a cure was by a life saving bone marrow transplant.

Jason and I were absolutely devastated. Finley is our only child and to be told that we may only have him for a few more months was not easy to accept, especially as he has been so well in himself throughout all his treatment.

We made the decision to go public with our story to help raise awareness of the bone marrow register and the need for more people to sign up. In October 2013 we held a recruitment drive on the Isle of Wight where the Island residents really showed their support, and over 4600 people joined the bone marrow register (2211 were in just one day).

We were told that Finley has a rare tissue type and a match could not be found for him, but luckily one was found on the cord blood register (where the umbilical cord is frozen from new born babies).

Finley received even more intense chemo in preparation for his transplant and was admitted to the children’s hospital in Bristol during November 2013.

We returned home from Bristol hospital at the end of January where twice weekly hospital visits were made at Southampton General for a few weeks to closely monitor Finley. These then reduced to once a week. Finley now only needs to go once or twice a month but is seen by the community nurses each week.

Finley has just reached 6 months post transplant and is doing very well although has had to have a few stays in hospital due to infections. He has just celebrated his 7th birthday which he got to spend with a few of his friends.

He has not been to school since summer 2013 and misses his friends a lot, however he does love his new Xbox console and iPad which was very generously bought for him.

We have three cats (Megan, Sammy and Smartie) who Finley loves very much and he is looking forward to being fully cured and having no more hospital visits so he can get his new puppy as promised.

Update January 2015

Finley celebrated his 1st year anniversary for receiving his bone marrow transplant on the 22nd November. We celebrated this by holding a party for all his friends and family and all those that have supported us throughout Finley’s illness. Finley dressed up as his favourite superhero (Superman) and arrived at the party with his girlfriend in a vintage American car. Party entertainers kept the kids amused whilst a band playing various music entertained the adults. We also got both Finley and his baby brother Sullivan christened the following day which was a lovely service.

Whilst at Finley’s appointment at Bristol Children’s Hospital last week we were given the best news in a long time that we can now treat Finley like any normal child with regards to illnesses. Before now for any illness/ high temperature etc we have always had to get in touch with our local hospital for advice and/or treatment, and more often than not spend a lot of time in hospital.

We have enjoyed a really lovely quiet Christmas at home this year, which is just as we wanted, especially after spending all of last year’s in isolation in hospital!

Finley has really loved receiving all his mail from Post Pals and cannot believe someone in Germany, USA, Japan etc, would think to write to him, let alone here in the UK! I would like to say a really big thank you to everyone that has kept Finley in their thoughts and have taken the time to write to him and or send him really lovely gifts, they really have put a smile on his little face. It is amazing to see how a postcard for your child can make a big difference to their day, especially when they are not feeling too great.

I think now is the right time for Finley to move on from Post Pals as he starts the new year being able to be like any other child his age. Your charity is amazing so a big thank you from both Jason and I too. We wish everyone a very happy 2015.

Update 30th September 2014

Finley has been doing really well and at the end of August had both his Mr Wiggly (Hickman Line) and tummy peg removed, which meant he could return to school at the beginning of September. He has also been enjoying swimming, something he has really missed over the last 18 months.

We are due to go on our first holiday to Devon soon. Due to all his appointments and medical needs it has not been possible for him to travel far for any time before.

Finley has really enjoyed receiving all his letters, cards, Dottie updates and gifts… thank you.

Update 24th July 2014

Finley has had a busy month! First he won an ‘Act of Bravery’ award through our local radio station for all that he has gone through over the last 15 months or so. He then became a big brother at the end of last month to our latest addition to the house hold, baby Sullivan, who Finley loves very much.

Finley has been back in hospital a number of times over the last week due to him feeling unwell. He had a few skin conditions arise on his body, tummy cramps and generally feeling unwell. His whole body then broke out in a rash and after a meeting with his consultant at Southampton General and a visit to a dermatologist, he was given the all clear, with it being nothing too serious. Looks like his body was fighting a virus of some sort and the rash was his bodies way of dealing with it.

Finley really enjoys receiving his own mail and loves all the cards and letters that are sent to him… they really put a smile on his face. Thank you all very much.

Update 2nd June 2014

Thank you for welcoming me to Post Pals, I have enjoyed receiving my welcoming cards and letters.

Story written 2014

Owen was born on 9th September 2006 and everything was perfect.

My niece born 5 weeks later and it started to become evident things weren’t right with Owen. At three months old he had this breathing holding episode where he went blue and stopped breathing. I managed to get him around and we took him to A&E where he was examined. We were told he had bad reflux and he was sent home with Gaviscon. As the months went on things were still not right. He was still having breath holding episodes, he had no developmental skills, he couldn’t hold his head, a spoon, or even a rattle. Health visitors advised me that he was fine and nothing was wrong, he was just born a bit early.

He failed his 6-9 month check as he couldn’t weight bear – well, basically he couldn’t do anything. I was one of these first time mothers that didn’t have a clue. We took him to the doctors and he visited health visitors every fortnight and they all said he was a slow developer and to try for another baby to bring him on.

After his first birthday I got so fed up as Owen’s physical ability was of a four month old baby. By this point Owen started having physiotherapy and occupational therapy, we also gained a community pediatrician, but I still wasn’t happy.

I took Owen back to the doctor as he was 13 months old and still having reflux and vomiting food, and he wouldn’t really drink anything. The made a referral to the hospital paediatric team where Owen was assessed and another doctor was called into the room. Another assessment was done and my husband and I were told Owen needed an urgent MRI referral as he had severe global delay. Owen had his MRI scan and was sent home. We were in good spirits as we thought he had nothing wrong as the nurse said if there was a problem you will know before you go home. Nothing was said and we went home.

A few weeks later I was holding a positive pregnancy test and two days after that I was holding a letter saying Owen has brain damage due to lack of blood flow. I spoke to the paediatrician and I freaked out as I just found out that not only do I now have a disabled son and the cause was unknown, I was also pregnant too.

We were sent to genetics who believed Owen had a stroke inside the womb and his MRI scan was then sent to the neuro team at Oxford.

After a few months Owen underwent various testing including a lumbar puncture at John Radcliffe Hospital Oxford. At this point I was 21 weeks pregnant with my daughter and all tests that Oxford managed to get all came back clear/negative. Owen’s breath holding was getting worse and it was taking longer to bring him round. One day during a genetics appointment the genetics doctor finally saw it. He was not breath holding at all, it was something called salaam attacks, also known as infantile spasms (epilepsy) and was finally treated with anticonvulsants at the age 21 months old. Owen was also having painful urination which was later confirmed as an over sized bladder which turned into a bladder diverticulum.

Two days before Christmas in 2008 we were called to John Radcliffe hospital for a second MRI scan which confirmed brain damage and again they thought due to lack of blood flow. Owen also had a lot of blood tests taken. In February Owen had a surgical catheter fitted called a suprapubic catheter and he also had more bloods taken for a second opinion as the blood tests in December confirmed low copper levels and low cereoplasmin levels. A sample of hair was also taken. We had a clinic appointment with Owen’s paediatrician which was unplanned and we were called in. Two days later we were also called in to see Owen’s neuro and genetics doctor.

On 24th February 2009 at 14:15, I heard the words NO parent should hear. As you are aware Owen has had several tests done, unfortunately I have some bad news. Owen’s blood tests and hair sample confirm Owen has Menkes disease, for which there is NO cure. Owen may not live to see his third birthday. Menkes is a terminal condition and children (boys) often die in the first decade of life.

Owen’s life and ours spiraled upside down. He lost his ability to feed and became tube fed. He also underwent a bladder diverticulum removal in February 2010 with a gastrostomy fitted at the same time. In May 2010, Owen’s reflux got so bad he vomited his full 200ml feed and this would also bring on a seizure. He ended up being admitted with aspiration pneumonia and ten weeks later he was admitted again with aspiration pneumonia.

On the 9th October Owen was struck with aspiration pneumonia, again brought on by a seizure, which lasted over one hour. He wasn’t allowed his emergency meds due to his night time med that he just had and it could have stopped his breathing. In October we thought Owen was fine and would be coming home the following day. I went home just for one hour to have a bath – this was the first time I EVER left Owen at the hospital. I come back to find Owen in respiratory distress. I was told Owen was in a bad way and may need to go Leicester Royal hospital. The anaethetist came in and basically told me that he’s in the process of losing his battle and in the process of shutting down. They put a nasal passage airway in to open his airway and when it was inserted I was shocked by the amount of secretions that flooded out of Owen.

By October 13th Owen’s health continued to deteriorate. We were basically told to let him go and withdraw all treatment. He wasn’t going anywhere, he just started nursery, he was granted a Make A Wish trip, he had a new room just built, he was not going to die – that was not an option. Owen loves his life and all the experiences he’s had since his awful diagnosis. I demanded help as I wasn’t ready for him to leave me. I knew in my heart Owen wasn’t ready to go. It was understood children like Owen never come off ventilation, I was told nowhere had ICU beds, I stressed he has the care that he needs, he has full resus on his medical records.

Owen was put on a ventilator in the adults icu in our local hospital, he was transferred later that evening to Leicester Royal infirmary to PICU. He stayed there for 21 days, 14 days of that was on a life support machine. During his stay he got ventilation pneumonia, he was put on a CPAP machine called the nippy and this deflated his left lung so he went back on the ventilator. It was the most traumatic time for us all, including our 2 year old daughter.

Owen pulled through after me stressing at him and reminding him only he can make himself better. If he wants to go back to school and have his wish trip to Florida then only he can do it. Two days later Owen was off all breathing equipment and being transferred back to Kettering General hospital on the 5th November 2010.

Owen was very fragile and needed an urgent fundoplication operation. He had this on 27th January 2011. Owen has been going from strength to strength since. He also had his trip to Florida with Make A Wish and this was an amazing experience for us all. One day we would like to go back and show Owen more of Florida as he was still a bit poorly when we went.

We have been taking Owen to Disneyland Paris nearly every year as he loves Disney so much. In December 2011, three days before Christmas, Owen had an emergency suprapupic catheter fitted as his diverticulums returned but much worse than before. His bladder and diverticulums were retaining 1000ml (1L) of urine. He was home for Christmas but he just slept the day away as he was in agony and it was so hard to see him like this. As the months went on the pain never shifted, he cried a lot and even school struggled with him. During his 6-weekly catheter change it became evident what was wrong. Owen’s catheter was placed in the wrong place. It was too close to his urethra, the catheter went into his stoma as usual, but went down the urethra and out the normal route. He was screaming, it is every male’s nightmare, even Owen’s dad was cringing at this and as a parent it was difficult to watch.

After a few months it was decided Owen was to have another bladder op. It was originally decided he would have a mitrofanoff, a very complex procedure. I researched like crazy and as I wasn’t happy it was decided he was to have a vesiocostomy, a stoma which leaks out urine. The operation went well although there were a few complications due to scaring tissue which made the operation difficult. Owen has coped so well post op and he was happy again.

In November 2012 Owen looked so pale, he had a virus that just wasn’t shifting. After a week I was just not happy and I was completely exhausted too. I sent Owen into hospital where he was examined but sent home. Owen become very lethargic and was sleeping constantly so I took him back hospital. This time he didn’t go back home and I demanded he had a blood transfusion as his hb was too low. Owen isn’t a candidate for iron supplements as his ferritin is too high. Two days after being in hospital his health was deteriorating, he was severely anaemic, had pseudonomas upper airway infection and was also a C. diff carrier. It was another disturbing time, he was given treatment including a blood transfusion, and again it was questioned how far are we going to push Owen before we stop treatment. I stressed we never give up on Owen and we do what we can to get him better. He completed his treatment and was discharged from hospital on 23rd December. Owen was all smiles Christmas Eve laughing etc, but Christmas Day he was a bit off again. Boxing day came and Owen was vomiting so went back in to hospital. If Owen starts vomiting he becomes dehydrated quickly and needs potassium supplements. He went home the following day.

On New Year’s Eve we noticed Owen had spots so we started New Year with Owen having chicken pox! This could have taken his life but he managed it and battled through it at home – it was hard work but we got there.

Owen has been fantastic since then, all smiles and laughter. We celebrated his 7th birthday, which was awesome. He had a car called Kettering Mcqueen which he loved and he loves balloons too so he had a balloon modeller. A week later we took him to Disneyland Paris, he was cold but he had a fantastic time.

He is such an amazing boy and he make us all proud. He has met some awesome people including Mr Tumble which he met last year via Rays of Sunshine charity.

I would like to say thank you for reading Owen’s story, please share his page as Menkes is rare and isn’t often thought of when trying to find a diagnosis and is normally misdiagnosed as basic cerebral palsy. I am so grateful for being pregnant with my daughter, if it wasn’t for being pregnant with her then Owen may still be undiagnosed.

Update 3rd January 2023

We would like to say thank you to all that have sent Liv post. She truly does appreciate it.

She has come on so much with her own personality and her confidence is starting to bloom. She still has alot of anxiety and frustration since the loss of her brother but she has an excellent school in which she receives some amazing experiences.

This year she went to Sorrento in Italy and did many of the excursions. As it was her first trip out of the country, she bought a necklace which is a healing crystal and she has now become a fan of healing crystals, it has helped with the anxiety of her day to day life.

She has an amazing opportunity to go to Paris with the school soon which she is excited to do. She will get to go to Disneyland for the day. The last time she went was when we all went as a family of 4, but this time she will have this opportunity with one of her best friends.  She will also go on many excursions in Paris, all of which will be new and hopefully exciting and not too overwhelming.

Liv has enjoyed her post from Dotty, se liked the last adventure to se the Gruffalo. She absolutely loved the fleece blanket from Sarah. 

She does appreciate all you have sent her and she sends thanks to you all.

Update 25th October 2024

Olivia’s likes and interests change regularly, like most teenagers! At the moment she is going through an Emo phase! She loves chocolate and has kindly asked for no personalised items.

Update 20th April 2020

We would like to say thank you Beverley for Olivia’s book from Amazon. Also thank you Bev for Olivia’s card and thank you Dottie for Olivia’s letter etc. They are all fabulous

Update 19th February 2018

We have decided after 4 wonderful years it is time we moved on from Post Pals to enable another family the opportunity to experience this wonderful charity.

We never expected Owen would reach another 4 years but despite the hurdles thrown his way he is fighting his way through life and living life the best that he can.

Owen’s health is very up and down and very unpredictable.

We will miss you all at Post Pals but we have reached a point where I need to focus all my time on my Dude.

Olivia loves her pals and she will miss you all dearly.

Thank you for everything.

Love Owen and family.

Update 14th November 2017

Owen has had a great month as we now have have some information from the hospice Dr and Great Ormond street hospital which makes perfect sense to a lot of Owen’s problems, we are trialling a few different food supplements as a result of the new information we have.

We have had confirmation that his bowels don’t work due to his underlying diagnosis, unfortunately there is nothing that can be done apart from and intestine transplant which Owen isn’t eligible to have, he is now on an elemental food supplement to try and help his symptoms..

Owen also has a lot of episodes where he twitches a lot, this is also confirmed and pain and as he has a faulty central nervous system which makes Owen twitch which is sparked from the pain signals from the brain.

We have a list of symptom management for both issues, his bowels and all his dislocations.. Hopefully we don’t need you use the medications that are listed in his symptom management as we know his pain is the trigger of his dystionic movements..

Thank you so much to the sender of Owen’s marvel encyclopaedia it is amazing.

Thank you to the extra smiles team for the giggle ball it is so soft and funny. .

Thank you Debby for Owen’s badge and cards..

Thank you Carolyn for Owen and Olivia’s cards they are lovely to know we received a card for world kindness day. The stickers are lovely too…

Thank you Caitlin for Olivia’s amazing monthly project, the photo frame with London Paris etc is amazing.. Olivia said you are the best.  She loved all the Halloween gifts too

Thank you Beverley for Owen and Olivia’s card and  Halloween window stickers they are awesome..

Thank you Bev for Owen and Olivia’s cards and Halloween gifts, the glasses were awesome.

Thank you Amele for Owen’s card it is lovely.

Thank you to the students at the university of East London for Owen’s letter it is fantastic.

Thank you Dottie for our monthly news letter your Halloween adventures look amazing.

Thank you Marty for Owen’s Halloween card and the smile card they are lovely.

Thank you Tianna for Owen’s letter your works are so kind . Thank you so much for such a lovely letter.

Thank you Jane for Owen and Olivia’s card and Mr poppers penguin DVD. This is a great movie..

Thank you to each and everyone of you..

This year hasn’t been a good year in general but your post makes life feel that bit brighter..

Update 17th October 2017

We are currently trying to get answers for Owens on going issues and it feels like no one wants to know from a medical point of view. His care providers have stopped so it doesn’t help matters as he requires 24/7 care so I am extremely tried we are in the process of finding a new provider. I had a chat with my Gp and he has explained Owen has exceeded all the help he can from a medical point of view and it will come a point that nothing more can be done.

We were at Great Ormond Street yesterday and from this it was explained Owen will never have a gastroenterologist as his problems are his diagnosis and there is no cure for that. His bowels no longer work, they haven’t failed but they don’t contract like ours so whatever goes in comes back out. There is nothing that can be done to help. It was suggested the only thing is a intestine transplant but the will never happen due to Owens diagnosis. I have just arranged all his advanced care plans and wishes which has added to my fog.

Update 11th July 2017

The PostPals party was amazing and we really had so much fun..

I do apologise again for not posting with Owen and Olivia’s post, it has been so hard since my mum passed away.

I would like to say thank you to Debby Owen and Olivia’s cards containing stickers, badges, play money etc, they are all lovely, the jokes are fab too.

Thank you Prys for Owen’s letter, I must say your handwriting for 8 years old is amazing, it is lovely to hear from you. (Caesws school)

Thank you to the sender of Owen’s card with the rocket with the dog, it is lovely. The sender is from St Albans.

Thank you Ann for Owen’s card  (balloons with Owen in glitter stickers), it is lovely. Also thank you for the balloons and notepad.

Thank you Dottie for your newsletter with all your litter mates,  we love seeing everyone with their own Dalmatian. The postcard with the horse was just amazing, I bet it was lovely to see.

Thank you for the party invite, the party was amazing.

Thank you Thea for Owen’s Minion card, it is lovely to hear you love books too.

Thank you Beverley for Owen and Olivia’s cards and letters, the Dragon you made for Olivia is amazing, the tigers card and pin is lovely too. Oh you should watch minions, it is funny.

Thank you to the Extra Smiles Team for Owen and Olivia’s cards, light word panel and Alice In Wonderland colouring books, they are all fantastic.

Thank you Ellen  (Caesws co school, Y3). It is lovely to hear from you.

Thank you Karen, Toni, Conner and Snoopy for Owen’s card, it was also lovely to meet you all at the party. I hope Connor was ok on the journey home..

Thank you Milly, Fly and Moss for our funky pigeon cars? It is awesome. It was a shame you amazing dogs wasn’t at the party.

Thank you Kathleen for Owen’s post card from San Diego it is fantastic.

Thank you Ann for Owen’s Owl card, is is lovely.

Thank you Bev for Owen and Olivia’s parcels, the Star Wars picture is fantastic. The Horrid Henry audiobook is fab, Owen has listened to it a few times.

Olivia loves the scented ice cream erasers. The Haribos didn’t last long lol.

Thank you Charlotte from Bear Hugs for Olivia’s parcel, everything she had was lovely, she loves notepads and sweats. She wears the hair grip a lot too.

Thank you Caitlin for Olivia’s parcels they are awesome, the super hero one brought water to my eyes, the picture frame is beautiful. She loves the sunshine parcel too, I hope you had a lovely time in Scotland.

Thank you Ella for Olivia’s card, oh wow your drawing is amazing. Thank you so much.

Thank you Ann for Olivia’s card with the flower and glitter letter stickers, it is lovely.

Lastly thank you Stuff In A Box for your amazing boxes. They are fabulous.

Update 2nd May 2017

Owen has been struggling with his airway for the past few weeks. He is happy enough though so we have managed to avoid the hospital. He just performed in his school play called the Jolly postman. Owen was the car in Grease lighting, it was brilliant. Thank you so much for all the post the past month, I do apologise not sharing on social media all the post Owen has received, I have shared the post when his is happy and well.

The 3d card from the extra smiles team is fantastic.

Thank you Cheryl for all Owen and olivia’s post and gifts they are all fabulous, the jokes are great too.

Owens card made with animal poo is fascinating, it is awesome, just shows paper/card can be made from anything.

Olivia’s post from your trip from the sea life centre is lovely. We hope Ray of sunshine enjoyed his day there.

Also thank you for both Owen and olivia’s Easter cards.

Thank you Bear hugs for Owens lovely parcel, we have had fun playing with the paints and the ball is awesome too, thank you again

Thank you Ammie for Owens Easter card your minion drawing is fab.

Thank you Debby for Owens lovely card. We love it thank you again.

Thank you to the Oxford university for Owens pirate card, it is amazing.

Thank you Jen for Owens post card from Singapore, it is fab.

Thank you Alison for Owens beautiful handmade Easter card, it is lovely.

Thank you Chloe for Owens card and gift,  they are lovely.

Thank you Ann for Owens awesome robot card, it is fantastic.

Thank you Charlie for Owen’s card it is fantastic, Captian America is one of Owens favourite’s.

Thank you Bev for all Owen and olivia’s post and gifts they are all fantastic, the star wars DVD and card are awesome..

Thank you to the sender of the panda card. It is lovely. I apologise I can’t read your name, I think it is Ameth.

Thank you Tj for Owen’s card and thank you for the kind words, they truly mean a lot.

Thank you Tamara for Owen’s card, thank you so much for the gifts, the bath fizzers smelt lovely.

Thank you Marty for Owen’s Easter card, it is lovely.

Thank you Lyn for Owen and Olivia’s easter cards, they are beautiful. Owen’s card is lovely and glittery.

Thank you Vikki for Owen’s Mr Tall sunflower kit. It is awesome.

Thank you Dottie for Owen and Olivia’ newsletter they are fantastic as always. Your eggs looked like they were cooked perfect.

Thank you Jenny for Olivia’s Betrix potter card it is lovely.

Thank you Milly, Fly and Moss for Olivia’s card it is lovely, we always enjoy your adventures.

Thank you Caitlin for Olivia’s easter post, she absolutely loves her little chicks.

Update 6th March 2017

Owen has had a better month, still not quite 100% he is having episodes where he forgets to breathe, we have no idea what this is or why he is doing this.

Thank you so much to the extra smiles team for your amazing Disney box, it felt like Christmas here again. The gifts are just amazing.

Thank you Cheryl for Owen’s Star Wars sound book it is amazing and he loves it so much.

Thank you Dottie for your cute news letter, your holiday looks amazing.

Thank you Milly, fly and Moss for your card and letter, it is always a pleasure to hear from you, your adventures are amazing.

Thank you so much Piper the red setter for Owen’s card, you sound so adorable.

Thank you all so much for making us smile.

Update 15th February 2017

Sorry for not posting on Owen’s page with all his post this month, we have had a very emotional month with the loss of my mother, although it was expected it was was sudden and a shock to us all.

I have been so out of sorts to keep updated as not long after my mum passed away Owen become really agitated and simply not right, with this he went to hospital and needed a blood transfusion, he hurt his arm which is already dislocated which didn’t help matters. He went on antibiotics on the just incase he had an infection and we were admitted for almost a week.

Thank you to everyone that that sent their love and support over the past 3 weeks it truly means a lot.

Owen has received a book from Andrea which has come from all the way from New Zealand, thank you so much for the book and card they are fantastic.

Cheryl thank you so much for Owen and Olivia’s seasons project. Their books are lovely, Owen’s cd it great too.

Also thank you for our Chinese New Year cards and lucky coins.

Thank you Bev for both Owen and Olivia’s valentines cards and gifts, Olivia dough robot it great.

Also thank you for Owen’s Star Wars watch and Olivia’s Tsum Tsum purse. They are awesome.

 

Thank you Dottie for Owen and Olivia’s newsletter, they are great as always.

Thank you so much Caitlin for Olivia’s Seasons’s project, she loves the hand warmers, hat, she loves them all.

Thank you to everyone that sent post cards and letters.

All your post has made us all smile.

 

Thank you Cheryl for Olivia’s Nomination bracelet, it is beautiful, she said my post pal really must like me.

 

Thank you Caitlin for Olivia’s package which arrived this morning, with the oreo’s stickers and play doh they are all great and all her favourite things.

Thank you to the Extra smiles team for both Owen and Olivia’s 3D card they are so awesome. We love them.

Also thank you for the Marshmallows kit that was amazing, thank you so so much. The strawberries and cream was our favourite.

 

Thank you to the senders of the Hong Kong post cards they are fantastic.

 

Tony Stark your Iron man drawing is amazing, thank you so much.

Thank you Marty for our lovely card.

Thank you Philip for Owen’s post card your iron man drawing is fantastic.

 

Thank you Rhy from Australia for Owen’s post card it is lovely.

Thank you Sinina for Owen’s post card, Thor is our favourite.

Update 5th January 2016

Owen has had a very good November and December. We have had plenty of smiles. We have had reports back from Great Ormond Street from Owen’s admission in October and they remain inconclusive, which is exactly what we didn’t want to hear, so we are still unaware of what Owen’s pain is. As the result is inconclusive we have approached wheelchair services to review Owen, as we have conformation of 2 unusual dislocations of his elbows, and both wrists are dislocating as a result of this. Both issues can not be repaired as Owen’s low muscle tone is the cause. Owen’s scoliosis is fixed now which is upsetting as it has left Owen rotated to the right, leaving his right shoulder curved and also at the point of dislocating. But despite this he smiles and battles on.
He had a blip on New Year’s Eve which could have ended up bad but we managed to get Owen stable again and he is ok again.

I am overwhelmed with the continued support of you all at Post Pals. It hasn’t been the easiest of years, especially as my Mum has got incurable cancer, and 2 weeks leading up to Christmas we found she has secondary cancer on the brain which again can’t be cured. So I do apologise if I haven’t kept up to date on sharing photos of Owen and Olivia with their post, it has been quite a tough time. Everything 2016 brought; with Owen almost losing his life in May as well as his ongoing issues and as well as his new issues, plus my Mum’s cancer has played heavy on us all, especially Olivia, she become so insecure and felt so low it was heartbreaking. Owen’s Facebook page ‘Owen’s fund menkes awareness’ has now changed to ‘Owen’s life with Menkes’. It was changed to ‘Owen’s fight with Menkes’ but fight wasn’t the right word for Owen’s page.

Thank you to everyone for your wonderful post.

In November, Owen and Olivia received letters and gifts from Isabel, Grace, Matthew, Ayran, Rudi and Oliver from 2nd Norbiton cub pack. Thank you so much for your kindness and your letters were so lovely and perfect.

Thank you Robyn for Olivia’s letter, oh wow you love Queen too, how awesome. Giraffes are cool, they are lovely animals.

Thank you Henry and Olly, Owen’s letter is fantastic.

Thank you Frank for Owen’s postcard. Wow, a pilot, how awesome. Owen loves planes, but unfortunately due to his general size and poor muscle tone, we simply can’t fly any more.

Sophie, your letter/card is brilliant. Thank you for telling us about you. Owen and Olivia have been in a fire engine too.

Thank you to the sender from Australia, the postcard with 2 dogs on it is lovely.

Thank you Kathleen, all the way from San Diego, for Owen’s postcard, it is fab and colourful. Post always makes us smile.

Thank you so much Kim for Owen and Olivia’s plate for Santa and his reindeer. It is beautiful, thank you so much for the card, too.

Owen received a letter from students in France. Thank you so much Julien, Pierce and Tomas. Thank you so much for thinking of Owen, your letter is brilliant, we like the cinema too. Your drawings are perfect.

Bev, your advent calendar was just wonderful and Olivia loved it so much. It lifted her emotions so much, she appreciated everything that you sent. Thank you for Owen’s Horrid Henry audiobook and his plush penguin, they are fab. Owen loves his audiobooks.

Cheryl, thank you so much for Owen’s Card and Star Wars fibre optic lamp, we love it. Thank you for the Star Wars ice cube trays, they are fantastic, we used them as jelly moulds and ice cubes. The glitter jelly was lovely too, the galaxy chocolate was lovely and went perfect in the Star Wars chocolate moulds. Thank you so much for all the DVDs you sent from Nov until Christmas, we failed to source a good advent for Owen so we had a Christmas book and Christmas DVD every day until Christmas. A massive thank you for all the wonderful Christmas presents you sent, they actually made me an emotional wreck but in a good way. What you have done and sent during 2016 is amazing I simply cannot thank you enough for all Owen’s DVDs, BB8 light which is always on at night, his blanket is getting plenty of use, the tops will be perfect come spring/summer. Olivia’s scarf is perfect and she looks beautiful in it, she wears it all the time, she is actually out with her Oms as we speak wearing her scarf. It is genius, all scarfs should be like that, it is amazing. She loves the Build A Bear clothes but she didn’t want to use them on her troll poppy, but as she has another build a bear that she calls Star, she changed her multiple times a day. She loves them so, so much.

Caitlin, thank you so much for Owen’s December parcel, she squealed in delight with the Pokémon annual and the T-shirt, she loved the chocolate lollies too, she loves them all. Olivia has enjoyed all your post during 2016.

I don’t know who the sender of the silver star paper was but Olivia loves her gifts, especially her pencil case and pencils, the beads, the whole package was perfect.

Thank you so much Mal for my lovely chocolates, I am eating one each day as they are lovely. Owen’s Star Wars headphones are perfect, Olivia’s little mouse is perfect, she loves it so much. Thank you again.

Thank you to the Elves, Dan, Kia and Orla for Owen’s Christmas card and ice cream playdough maker. It is great, we have had so much fun with it.

Thank you to Elf Shanks for Owen’s Minion lamp, Minion fibre optic lamp and joke book, Owen loves jokes, they are all perfect.

Thank you to Sylvia for Owen’s Marvel blanket, it is lovely.

Thank you Elf Sarah for Owen’s card, Minion blanket and Minion lamp, they are lovely.

Thank you to all the Extra Smiles team for all your cards, the pop-up tree decoration card is fantastic. The advent card was perfect. Also, thank you for the Christmas photo booth, it is fantastic and Owen loved most of the props.

Thank you Mrs Hall for your Christmas card.

Thank you Vicki for Owen’s card, it is lovely.

Thank you Becky & Mark for Owen’s card, it is lovely.

Thank you for Owen’s handmade card Niamh & Bo, it is perfect.

Thank you to the sender of the Santa card the drawings inside are wonderful.

Thank you Jenny for Owen’s handmade card, it is lovely.

Thank you Andrea for Owen’s card. it is lovely.

Thank you so much Emily for Owen’s card. it is lovely and lovely to hear you like Marvels too.

Thank you too all the Elves that sent cards and letters they are all wonderful, we love Elf mail as it makes Christmas even more special.

Thank you Amy for writing and making a card for Owen, it is lovely.

Thank you so much Alice for your card and writing about yourself. So sorry to hear you have your own battles too, I hope you have had a wonderful Christmas and managed to stay well. Take care.

Thank you Claire for Owen and Olivia’s cards, they are lovely.

Thank you Lindy for Owen’s cars card, it is perfect.

Thank you so much Kate, Xander and Rowan for your Christmas card. I hope all is well with you all and we hope you had a wonderful Christmas. Thank you for being our pal in 2016.

Thank you Ann for Owen’s cute bear card, it is lovely.

Thank you so much Denise for our card, it is perfect.

Thank you Despina for Owen’s card, it is perfect.

Thank you Marty for you card, it is lovely and glittery.

Thank you Annie for Owen’s card, it is lovely. I will send you a separate email to thank you too, Judy, in case your parents don’t read this comment.

Oh wow, princess Elsa for Olivia’s card, she loved it so much.

Awesome Thor for Owen’s card, it is amazing.

Thank you Lyn for Owen and Olivia’s card, it is amazing. I love what you do with your cards, thank you for my card too. I hope you have had a wonderful Christmas.

Thank you Corné from the Netherlands for Owen’s Christmas card. Owen likes all kinds of music, Sia and Taylor Swift are his favourite at the moment.

Thank you Minah for Owen’s handmade card, it is brilliant.

Thank you to you all at 2nd Upper Lancaster Rainbows for Owen’s Christmas card, it is beautiful.

Thank you to everyone at 1st Singleton Brownies for our cards, they are beautiful.

Thank you Leon from scouts for Owen’s cars, it is lovely.

Thank you so much to all the reindeers, you always make our Christmas special and make all our worries fade for a while, you all help us lift our spirits and we are so grateful for our cards. You all, combined with everyone else, has made Olivia feel so much better and she isn’t as OCD like she was in August.

Thanks Mrs Claus for your letter and recipe North Pole mail, always makes us smile.

Thank you Sean from 14 W.O.T.H Scouts for our card, it is lovely and sparkly.

Thank you Jane (Skye) for our card and Owen and Olivia’s stickers, they are lovely.

Thank you Dottie for all our news letters The Coca Cola truck looks awesome. You looked nice and cosy on the sofa too with your blanket. Your newsletter with Milly, Fly and Moss is awesome too, you always have amazing adventures. Thank you for our card too it is fantastic.

Thank you Milly, Fly and Moss for our Christmas card and your Christmas story, it was fantastic. You should write a book as it was so fun to read.

Hi Sarah, thank you so much for Owen and Olivia’s letter with the Japanese dogs that have cube hair cuts and the hedgehog cafe in Tokyo letters, they are great. Olivia said the dogs look like they are from Minecraft. The stickers are awesome too. Thank you again.

Thank you Katie and Rachel for Owen and Olivia’s handmade card, it is lovely. I hope you got a visit from Santa too.

Thank you Maria and Michael for our card, it is lovely.

Thank you Chloe G for Owen’s card, it is lovely.

Thank you all again for everything.

Update 16th November 2016

We have been to Great Ormond street hospital for investigations to try and figure out what is causing Owen’s pain and at this moment in time all his tests are inconclusive. However we have had their orthopaedic team review Owen too, they have also confirmed unusual dislocations of both elbows and unfortunately his wrists are dislocated too we have options of surgery but at this moment things are still on hold as test results are still pending.
Despite this Owen is smiling and more alert, Gabapentin has helped his state of mind and it is lovely to see him chuckling again.
Apologies for being slow posting Owen and Olivia’s post, everything is still crazy here and we haven’t had 5 minutes to breathe, to receive post from everyone had been lovely, I have been an emotional wreck myself, most of the messages sent have brought tears but in a good way, I have been overwhelmed by everyone’s love, care, compassion and generosity.
Olivia has also been hit emotionally as our life had been tough this year, we are slowly coming out of the other side but she still remains insecure. We had recently suspended care as we needed family time but I was informed I need care in the house as I never stop, so now care is slowly coming back into our home so hopefully Olivia with regain her confidence again.
Owen has had a bad year but he has given a good fight and is now smiling.

I would like to thank everyone for being you. You are all amazing.
The extra smiles team you are simply amazing and we can’t thank you enough for Owens amazing lights. They are very long too and are perfect in Owens bedroom, also thank you for Owen’s heart card, your joke made us all laugh. Caitlin thank you so much for both Olivia’s monthly projects, the fairy project was lovely and she too loves her feather lights. She collects erasers and her fairy erasers were perfect. She absolutely loved the opposite monthly project, the glow sticks were fantastic. She loved the hot chocolate and the chocolate milkshake straws, the books are fantastic too. She absolutely loved the fairy, the letter and the dust was magical. We both had tears as it was just perfect and just what she needed to make her feel special. Thank you Cheryl for Owens monthly project, the Audio book, book, DVD, and bird are all perfect and thank you for both Owen and Olivia’s Mr and little miss books and balloons. I love your personal messages inside the books too. Olivia absolutely loves the ladybird you sent her she plays with constantly. The stickers are lovely too. Also thank you for both their elf letters too, Olivia is in the process of replying back. It will have to type Owen’s reply out as I was originally going to do hand on hand but I am worried about his wrists and arms being dislocated.
Hey Bev, thank you so much for both Owen and Olivia’s post. Owen enjoyed his horrid Henry audio book and Olivia loved the home play clay and DVD.
Your cards are fabulous, they always make me smile as well as Owen and Olivia.
Thank you for your postcard from Wales too. It is lovely to hear you had a lovely time.
Thank you so much Dottie for all your wonderful news letters, haha I did have my suspicions about peppa pig world with your post card. Your peppa pig news letters went down so well.
I did love the chessington one too as we had the pleasure to meet you unfortunately I didn’t get a photo opportunity with Dottie as Owen was unsettled in pain so Owen was having a lot of mum cuddles.
Milly, fly and Moss, thank you so much for our lovely cards, your Halloween one was spooky, but we did love your jokes.A huge thank you for Olivia spy dog and cat books she was dancing around the room with them as she knows of these books.We love hearing about your adventures.
Thank you Marie Micheal for Olivia’s cross stitch notebook, glitter pen and book they are lovely, she loves them so much.
Thank you Anne from Norway for Olivia’s ornamental lambs and pen crayons then are lovely.
Thank you Poppy for your lovely Tiger card, Olivia enjoyed listening about sparkle the dog.
Thank you Jill, Grace & Henry for Owen’s glow stick, it went on for days. Olivia absolutely loved her sweetie bag too.
Thank you Simran for Owens lovely minion card, it is perfect. He likes any car really. He likes lightning McQueen. He has a friend that has a real car that looks like McQueen.
Thank you Susean for Owens minion card. It is lovely. Owen’s favourite song is Sia chandelier.
Thank you from everyone involved at the university for Owen’s card, it is lovely how it is made from Superheroes, the card is amazing and perfect. Also thank you for including myself and Olivia in the card. It make me smile.
Thank you to the firer fighter sender from Singapore for Owen’s card with the fire engine and car it is amazing.
Thank you Ann for Owen’s cute dog card.
Thank you Brad for Owen’s minion card, you are awesome for taking the time to make and send a card.
Thank you Lancia for Owen’s letter and keyring, the keyring is perfect. Ooh his favourite Disney movie, there are so many, Cars and Beauty and the beast, The live Dinsey Cinderella movie.
Thank you Marty for Owen’s Halloween card, it is fantastic.
Thank you Annie for Owen’s Disney Halloween card it is perfect.
Another thank you to GK unions university for Owens card with various stickers on it is cool.
Thank you Annette for Owen’s Pinocchio card, it is lovely.
A massive thank you to each and everyone one you that sent gifts, letters, poems, cards and letters from Nationwide building society. This is so very thoughtful of you all and very much appreciated. Thank you again.

Update 4th October 2016

Owen has been really good this month, he started Gabapentin to help with his pain and it is taking some of the edge off. He is due to go to Great Ormond Street hospital next Tuesday for more investigations and symptom management and respiratory review with discharge with a new breathing machine.

Thank you so much to everyone that sent post.
Cheryl, thank you so much for Owen’s lovely canvas and Simpson dvd. The post cards are fantastic especially as Owen is a huge star wars fan.
Thank you to the extra smiles team for both awesome boxes. Olivia’s wall decals are fabulous, the theater is great and we have all had a great time with it. The hungry caterpillar photo frame is beautiful.
Also thank you for the clay charms from Amazon Olivia got stuck into it immediately.
Thank you Bev for both Owen and Olivia’s photo booth props they are fantastic.
Also thank you for your lovely cards too.
Thank you Dottie for our newsletter, Gala day looked so much fun.
Thank you Marty for Owen’s card, it is lovely..
Thank you so much Caitlin for Olivia’s letter which was written by Georgia at Rainbows, it is lovely.

Thank you so much for all you support it truly means a lot.

Update 14th September 2016

Thank you Jeanette for Olivia’s card, it is lovely to hear from you.

Thank you Ann for Owen’s card, it is cute.

Thank you Rupert for Owen and Olivia’s letter and coloured sheet and stickers, it is lovely, Olivia loves to hear from animals, Owen does too.

Lastly thank you so much for both Owen and Olivia’s pop figures with candy they are amazing and they both love them so much.

Update 11th August 2016

Owen has had a stable month, although we have had a very busy month.
We had a nice holiday to Blackpool, although Owen is experiencing pain hourly sometimes a bit less, we still had a great time as Owen enjoyed Mummy snuggles on the bench, chair or anything we can find to rest. Although Blackpool is great for Changing Places, we made a lot of use out of them.
We have seen his new respiratory team at Great Ormond Street Hospital and his metabolic team and things appear to be moving in the right direction. Now we just need to get the appropriate appointments through to get Owen the right care.

Thank you to everyone who sent birthday cards to Olivia, they truly mean a lot. She is feeling low at the moment, and the cards did make her feel special.

Thank you Dottie for your lovely card. Also a huge thank you to Penny, Mark, Becky, Owain Murphy, Skye- Jane, Lyn, Maria & Michael, Milly, Fly & Moss for Olivia’s beautiful cards, they truly mean a lot.
Also thank you Caitlin for Olivia’s lovely card and Shopkins stickers and Shopkins surprises, they are fabulous.
Also thank you Bev for both cards for Olivia and her good dinosaur gifts and thank you for her clay that arrived today, she loves it so much.

Again thank you Dottie for your awesome splash post card and your newsletter.
It looks like Owen and Olivia’s favourite dogs had a blast at Dog Club.

Thank you Annette for Owen’s card.
Owen is enjoying the sunshine but he is getting a bit hot lately.

Thank you to the sender of both cards from Singapore, they did make me smile.

Thank you Skye for Owen and Olivia’s postcard with the Die cut from China, it sounds like you had a great time.

Thank you Bev for both books with audio CDs for Owen, they are fantastic. Owen has listened to mustard custard so many times, he loves it.
He will enjoy the pirate one that arrived today, too.

Thank you Milly, Fly and Moss for Owen and Olivia’s card, it sounds like you had so much fun with your new friends.

Thank you Hilary for Owen’s pirate sticker book and postcard, they are great. Olivia has had fun helping Owen with it.

Hi Kate, Rowan and Xander, I hope all is well with you all, I hope you had a great time at the cinema. Olivia went to see Finding Dory for her birthday treat.

Thank you Jasmine for Owen’s fabulous card from Singapore. Owen likes Thor too.

Thank you so much Toni, Karen, Connor and Snoopy for my England card.
I hope Connor loves his new cat smudge.
Xx

Thank you so much Jacob and Hallie for Owen’s lovely card and light up tambourine, they are awesome.

Hi Sarah, thank you so much for Olivia’s loom band set. She has made a few bracelets already.

Thank you so much Cheryl for Owen’s fabulous monthly project. Owen’s picture bunting is awesome, we love the sun catcher too, all the gifts are lovely, thank you again. Also thank you for your postcard, looks like you had fun at London Zoo.

Thank you to the Extra Smiles team, the sun catcher is fabulous and looks great.
Also thank you so much for the kite. Olivia is so looking forward to going out to use it.Again thank you to all, you are all truly amazing and you do make us smile.

Update 8th July 2016

A huge thank you for all our gifts this month. Maria: Olivia loved her package so much she takes her notebooks to school too. The rubbers, she absolutely loves them, the lanyard, everything they are all fabulous. Thank you so much Caitlin for Olivia’s wonderful project she loves them too. The heart you made is beautiful and is hanging in her bedroom. She still loves that outfit from last month. Also thank you for Owens postcard from New York, it is a place we would love to go too. Thank you Dottie for our playground postcard and strawberry picking newsletter, as always they do make us smile. Thank you Orla for Owens minion card and Minion zip pull and minion toy, they are great. Thank you Emily for Owens robot post card, we don’t have any pets, oh wow 3 dogs I bet they are so much fun. Thank you so much Jenny for Owen and Olivia’s stickers and play clay, Olivia loves that stuff, she makes people out of it. Olivia loves her jokes too. Owen likes marvel films. Thank you Ann for both Owen and Olivia’s card, Owens does look like a cheeky monkey.  Thank you so much Cheryl for Owens monthly project, the sun catcher is beautiful, scooby has been watched 3 times already. The books are great too.  Thank you to the wonderful extra smiles team, your star sun catcher did make me smile, we love it.  Thank you Kate, Xander and Rowan for Owens awesome finding Dory card it is fab.  We can’t wait to watch it.

I would like to thank you all for being amazing, supportive and you help us forget just for a short while, we haven’t had the best start in 2016 but you all help us keep strong.

Update 11th June 2016

Olivia is doing great. She is now officially a brownie and has her brownie badges for her promise brownie law.

Thank you Caitlin for Olivia’s by the sea project they are fab, she loves her outfit. Thank you Tracy for Olivia’s beautiful crochet card it is perfect. Thank you Nadine for both Owen and Olivia’s card they are perfect. Dottie your news letter is awesome and we have just received your postcard, you do have so much fun. Thank you Hotaro the magical fox for Owens card. Thank you Kate, Xander and Rowan for your card and your letter on the cath kidston paper, we love cath stuff. Oh wow riding for the disabled sounds so much fun, I went on a horse once when I was much smaller. We went butlins in the school holidays as the weather wasn’t brilliant we came home. Thank you Bethany for my cool monthly project of spots and stripes, the gifts are perfect

Update 12th May 2016

This month has been a mixed bag of happiness. Hayfever kicking in, then we were in hospital for 2 weeks for respiratory review that went in a horrible direction and led to conversations we didn’t want to hear. We are appealing and awaiting a second opinion.

It is all too complicated to compile into a Pal update, but some parts are on Owen’s fund page. I would like to thank everyone involved in the butterfly garden. We are still to buy our caterpillars, which we will hopefully do in the coming weeks.

Jenny, the parcel you sent was just amazing. Wow and wow, what a lovely international parcel – it is amazing – and thank you for the get well card. Thank you to Kanil, Jorge and Gareth  (UK unions students) for my card, it is fab. Thank you Dottie for both Owen and Olivia’s card and newsletters. Your adventures are just amazing, as always. RAF, oh wow, how awesome. Thank you Claire for my letter and Thomas the tank engine books. They are great, thank you, again. Thank you Lyn for my lovely Apple cards, they are lovely. Thank you for my Peter Rabbit CDs, Leanne, and email with the CD, too. The stories are great. Thank you Kate, Xander and Rowan for my postcard from Centre Parcs. I hope you all had a wonderful week there. I have heard wonderful things about Centre Parcs. Thank you Marty for my card too, it is lovely. Thank you Owain for my hippopotamus post card. It did cheer us up, thank you. Thank you Ann for my Spider-Man card, it is awesome. Thank you Bev for both Owen and Olivia’s card and finger painting book, and Owens awesome pirate book. It is a huge hit, we love all the hidden compartments in it, too. It has been read to Owen 5 times already. Thank you Debbie for Owen and Olivia’s card with stickers and a colouring page, they are fabulous. Thank you Dawn and Sky for the Disney projector, cards and the New Zealand animal, which Olivia loves. Thank you for all your support over the last few weeks, you are all truly wonderful people. Thank you so much Caitlin. Olivia loves her fabrics and scrapbook, they are are fab, and also thank you for my little gift, too, it means a lot.

Update 3rd March 2016

Owen has had a great month. We have had a few seizures, but it is manageable. Owen has been enjoying his music therapy and is playing the keyboard with the slightest touch. He is so vocal and happy again, too.

I would love to say thank you to everyone who has sent gifts for us all.
The crocheted blanket is so beautiful and is used daily. The interactive bird is just amazing and Owen loves it so much. He cuddles his duck/swan, too, he loves the texture of it. We absolutely loved the balloons, too. Thank you so much much Hayley for all these gifts, they truly mean so much and are very much appreciated. Thank you so much Merlinda for all your wonderful cards and gifts that were in the extra smiles box for Owen. The die card is absolutely beautiful, I love it, the valentines card it lovely, too. I accidentally opened the Easter card, too, that was in the box. All the handmade cards you made are beautiful, and thank you for all the Minion jokes, puzzles and goggles, too. Thank you to the people at the university for Owen’s card, too, it is fabulous.  Ann, your wild thing card is just amazing, I love it so much.  Thank you Dottie for your Valentines card and letters. We love your skiing note, it looks like you had a fabulous time in the snow. Thank you, also, for our note with our friends featured in it, too. It always makes us smile to see Dottie and friends. Hi Bev, thank you so much for both Owen and Olivia’s Valentines card. And the books are fabulous, Olivia’s book is just perfect, she has read it at reading time at school.  Hi Milly, Fly and Moss, thank you so much for Olivia’s card and Facebook post with the basketball. It is always lovely to hear about all your adventures. Thank you Caitlin for Olivia’s monthly project, the books are great, she has taken then to school to show her friends and she reads them at learning time. She takes all her reading books to school to show her friends and tells them about her Pals.  Her notepads are perfect, she goes through so many notepads, etc. as she loves drawing and playing school. Her activity books are great, too.  Thank you so much to the extra smiles team for all our boxes of gifts, and the balloon was just fabulous. Owen loves them balloons so much and he gets so much enjoyment out of them. We are still to make his jiggle stick from the box. All our gifts are wonderful and perfect. Thank you Abigail for your lovely letter for Olivia. I hope your parents evening went ok. Thank you Skye for always being there on Facebook messenger, it is lovely you always ask how we all are. It truly means a lot.

I would like to apologise for not posting everything in Owens fund menkes awareness page, we have been extremely busy finishing off our renovations, we are finally finished with it now. I would like to thank you all for your generous gifts, you are all very lovely wonderful people and you put massive smiles on our faces.

Update 6th February 2016

Update 22nd January 2016

Hi everyone, I would like to thanks to Skye, Bev, Caitlin, Dottie, Moss and Candy Chaos for your post this month.

This has been a horrible month for Owen. As you all know he had a horrible 6 months with his epilepsy, so his medication was changed again only for this last anticonvulsant to cause a whole lot of issues. He had a very bad allergic reaction and we ended up being admitted into hospital. Following a blood transfusion, and due to the reaction which his skin was burnt from the toxin, he also contracted strep and also a urine infection due to his white and red blood cells reduced because of this medication.

Following this hospital admission, we have come to learn Owen has an issue with his heart and we are now under the cardiologist.

Over the past few days we have seen Owen being himself again – laughing and smiling.

When we received the Candy Chaos box he was having a good old rummage. It isn’t something he has done before which was fantastic to see.

We have just currently decorated his bedroom red and blue, and he absolutely loves it. He didn’t sleep much at all in pure excitement.

Olivia absolutely loved her treats from Caitlin, they were fantastic. she loves Leo the lion, and the hot chocolate and marshmallows were just awesome.

Skye, I loved the handmade windchime, thank you so much.

Update 3rd January 2016

Thank you so much to each and every one of you sweet Elves for making our Christmas special. Olivia absolutely loves all her gifts, especially the huge teddy from Florence and friends, the cat Beany Boo was a great hit too. Owen’s gifts are fabulous too; the box of various Sensory lights and tackle items are just fabulous. The Mickey Christmas DVD has been watched several times. All the books both Owen and Olivia got are just fabulous. Olivia already coloured her owl cushion on Christmas Eve. We loved seeing all the glitter on the lawn from all the Reindeer food and a wish was made. The wish was for a real horse,  lucky enough Olivia wasn’t too disappointed by the wish not coming true. The gifts from Mrs B’spoke gifts are just beautiful and will be treasured forever. Oh, and to the sender of Olivia’s frozen baubles, they are beautiful and went on our Disney theme tree just beautifully.

Thank you to everyone for your letters, cards and notes. It is so lovely to be a part of such a wonderful charity.

Also, thank you to all of our Post Pal friends that contact us via Facebook, either on my own personal Facebook or “Owen’s fund menkes awareness”. Your conversations, updates and generally checking how we are, it means so much, especially as Owen has had yet another horrid month. This time with his new medication to treat his epilepsy. He got a serious skin allergy from it. If we didn’t identify it when we did then things could have proved fatal. Owen is being a trooper and battling through it all.

He absolutely loved his presents, especially the funky Beany Boo monster that talks. It did make him laugh. Thank you, again, for your continued support, and thank you so much for being you. You are all wonderful people.

Update 1st December 2015

Owen has had a much better month, although his epilepsy is still problematic so we are due to change his medication again for the third time, so third time lucky, I suppose. He has really enjoyed the books that have been sent, especially the ‘I wish I had a pirate suit’ and ‘Pizza For Pirates’. Despite the change in medications again he is coping well and is more social.  The Candy Chaos box was just amazing, the popcorn was sublime. Thank you to all involved with this lovely treat. The popping candy was fabulous for Owen although he doesn’t eat he does have tastes. He finds the popping amusing. The monthly projects from Florence and friends are amazing. Olivia absolutely loves her cat costume, she wore it on Halloween and to a fancy dress party. I would like to take this opportunity, again, to thank you all for your wonderful post. It all means a lot and the smiles from us all are just immense.  Thank you again for your continued support.

Update 15th October 2015

Owen has had a horrid time with his epilepsy, which has been variable for the past year. He had his medication changed in July, only for them to fail him and he went on yet another new med in September. Now we are in October hopefully we are starting to get Owen back.

Hannah, Olivia has often spoken about you being her Pal. Please don’t feel we are ignoring you. Owen really has been in a bad place which has been physically and emotional straining on my part. I know we haven’t heard from you in a while. Again, please don’t feel Olivia doesn’t want to be your Pal. It really has been a real tough six months for us. I have changed my phone so all addresses that were on there have also gone, so anyone wanting post from Owen and Olivia please forward me your address and we will send something.

I would like to say a massive thank you to:

Florence and friends, you are truly wonderful people. Your monthly projects are just amazing and I appreciate the things you have sent Owen, too.The last project was fabulous and perfect for our holiday. Owen’s birthday present is fab, now his epilepsy is getting there he is having more enjoyment with his Olaf. Dottie the Dalmatian and Milly, Fly and Moss, your adventures have kept us all going and it has been fabulous today see all your adventures. It was lovely to see your litter mates on your news letter, always such a pleasure. The glow sticks and the little sticky sin go’s the sticky things actually got stuck on the ceiling and left a face print. Oops! Owen’s birthday cards were fab, too. A massive thank you to Toni, Karen and Conner for your fabulous birthday card. Love, love, love it. I hope you feel better soon, Conner. Skye, again thank you for your continued support via Facebook. Olivia loves her Frozen puzzle, animal cards and postcard. Your friendship means a lot.Thank you Tarya for Olivia’s wonderful postcard from Finland. I hope you had a wonderful birthday party. Thank you Ana for Olivia’s beautiful card, and thank you for Owen’s pirate card, it is fab. Thank you to Owain for both Owen and Olivia’s card and little gift, we loved them. Thank you Helen from Cornwall for Owen’s pirate card, it is fabulous. You are very good at drawing, the pirate is amazing. Thank you Hilary and Jen for Owen’s meerkat card, it is lovely. Caitlin and Gracie the dog, the card you made for Owen was just fabulous, it did actually make me cry. I love it. Thank you Chris for Owen’s card, it is lovely. Thank you Mark for Owen’s colourful 9th birthday card, it is fab. Thank you Marty for Owen’s card, too, it is great. Thank you Lyn for Owen’s card it was amazing. Thank you to Bev for both Owen and Olivia’s card and for Owen’s DVD and Olivia’s princess gifts. They’re fab. We also had a lovely letter and picture made by an Albanian girl, and the friendship bracelet is beautiful. The letter is lovely, thank you so much. Extra Smiles team, the glasses are fab and, also, thank you so much for my notepad too. I do get overwhelmed when I receive gifts . A huge thank you. Thank you Jet, Jonathan and Kenny for Owen’s activity book, it is great, and thank you for my letter too.

Sincere apologies if I haven’t posted pictures with both Owen and Olivia with their post.

Update 6th September 2015

Thank you this month to Post Pals, Marty Lonso, Karen, Toni, Connor & Snoopy, Milly & Fly, Kristie, Florence and friends, Tashja & Jasmine, Michelle, Sophie, Dottie, Hillary & Jeni, Emilko, Lyn and Bev, all for Owen and Olivia’s wonderful post and gifts. To Jasmine, pugs are Olivia’s favourite dog. Milly and Fly, that note pad you sent was pawsome, I thought it was you on the front cover! Dottie, Millie & Fly, we always love to hear about your adventures as they are fabulous. Thank you to everyone who sent Olivia birthday cards and presents too as they are all wonderful. Thank you to everyone who has sent Owen birthday cards and little gifts too. We haven’t opened them yet but I will post them all on his Facebook page next week, Owen’s Fund Menkes Awareness. I do apologise if I have missed anyone. Florence and friends, your monthly projects are superb. Olivia’s birthday box was just beautiful and she actually shed a tear.

Owen’s seizures have come back again so there is not much to report really, but we have little smiles come though all the sezuires and spams.

Thank you all for your continued support and thank you Skye for always checking how we are on Facebook as it truly means a lot. You are all amazing and wonderful people.

Update 3rd August 2015

Owen has been out of sorts for sometime now. We have had days where we see smiles though which is good.

Owen’s epilepsy spiralled out of control very quickly and he had a quick change of medication which we are still reducing. We have visited Owen’s many hospitals in the past month, the last one being today at Great Ormond Street. We left there feeling very happy, content and hopeful, as we’re moving in the right direction with Owen’s health now, with his epilepsy currently under control.

Thank you so much to everyone that has sent Owen and Olivia post and gifts – you are truly amazing people.

Thanks again to Florence and friends, your monthly project boxes are just outstanding and Owen’s wall board is fabulous. Skye, thank you again for your continued support via Facebook – although I am never good with words, your support means so much. The vegemite Cadbury bar was actually quite nice when stored in the fridge. Thanks go to Bev too as we had so much fun with Owen’s bath popping fizz stuff. Such a fabulous gift. Thank you Toni, Karen and Connor, for Owen’s cars book. It was so lovely to see Olivia read it to him. I’d also like to say a huge thank you for the quilt that was sent for Owen this month as it is perfect. Claire and Michelle sent lovely cards this month to Owen, as did Mark to Olivia. We got to share in Dottie’s adventures, as well as Milly and Fly’s sending a ‘pawsome’ card from France. Olivia received some brilliant gifts too this month and says thank you. She also wants Hannah to know she hasn’t forgotten to write and will soon.

Update 4th July 2015

Owen hasn’t been too bad this last month – his seizures have been unpredictable with this hot weather, but he is doing okay.

I would like to say a massive thank you to everyone at We Love Paper Cuts, the frames you sent us all were just amazing and overwhelmed was truly an understatement. You guys are just amazing and there were many happy tears!

Thank you so much to Florence and friends for Olivia’s (always amazing) monthly projects and I can’t express how grateful I am that you sent Owen a gift pack too. The books are just fab and Owen loves them, so we had plenty of chuckles with the books. I was actually quite tearful with his gift. Florence and friends, you are just fabulous people and Olivia loves receiving your projects.

Thank you Toni and Connor for Owen’s Bug’s Life DVD, he has watched it a good few times. It is double sided too and I think it has different endings. Again, you are also fab and sending Connor big hugs.

Dottie, we absolutely love your adventures and I must say that your colouring skills are just fabulous.

Hi Hannah, thank you for your letters and cards. Sorry we haven’t written back yet, but I promise Olivia will sent to a letter really soon.

Thank you Anl for both Owen and Olivia’s handmade cards, they are fantastic.

Thank you Kat for your lovely postcard from south Cornwall. Hopefully one day we will take Owen to Cornwall so he can have a taste of Cornish icecream.

Thank you Skye for your regular contact via Facebook, it truly means a lot.

Again, I would just like to say thank you to all you amazing people as you really make us smile.

If you would like us to reply to you could you please forward your address/email so we can send a thank you.

Update 31st May 2015

Owen’s health is still very much up and down. We did have a good few weeks of a happy seizure free boy, but we are back to increased seizures again.

Thank you so much Millie and Fly for your pawsome card and letter. Always such a pleasure to hear about your adventures. Notes from Dottie always make us smile. You really do some awesome stuff. Thank you Becky Rideout for Owen’s card and ice-cream bubbles, the bubbles are just fab. Olivia is always blowing them for Owen. We love minions, we can’t wait for the movie to come out. Thank you to the Dreter family for Owen’s card, the teddies card is cute. Hi Hannah, Olivia just received your card this morning and I am so pleased you received Olivia’s letter. Thank you Florence and friends for your monthly project which is always fabulous. Olivia absolutely loves it all. The bee and wind chime are on Owen and Olivia’s cabin and they look awesome. I simply can’t thank you all enough.

Update 1st May 2015

Thank you so much for both Owen and Olivia’s gifts this month. Florence and friends, your monthly projects are wonderful and very much appreciated. Olivia has become quite taken with bath bombs. We are still enjoying the Beatrix Potter book and flopsy bunny from the last monthly project.

The senses box this month was just amazing. I know I always mention this but I would like to thank Skye for being such a fantastic support on my personal Facebook, your handmade sun catcher is just beautiful and we love the funky balloons you send too. The sound cards are fab. I haven’t really been around much on my personal Facebook as Owen’s health has been so unpredictable, but I have managed to get Owen back on track and back to being his happy verbal self. Milly and fly, we do follow your Facebook and your letters etc. are always fabulous and it really does make us all smile. Thank you also to Hannah for being Olivia’s Post Pal, as Owen’s health has stabilised I can help her write you a letter, I can only apologise it has taken so long. Lindsay, thank you so much for both Owen and Olivia’s card, the jokes are just brilliant. Thank you Toni and Connor for Owen’s fabulous gifts, the lip butter smells lush, Owen was really enjoying the smell and taste today, he also loves his spot the dog and he wouldn’t let him go.

Thank you all for everything, it truly means a lot. Many thanks.

Update 4th April 2015

Owen’s health is been so up and down at the moment, but now we are in spring the winter bugs will leave him alone so he can be the Mr Chuckles that he is. We have just started Owen on a blenderized diet and we are just taking things slowly with it as we don’t know what Owen’s weight will do (either lose or gain too much weight).

I would like say a huge thank you to everyone who has sent cards and posts cards. I have tried to upload as much as I can on Owen’s Fund Menkes Awareness page. It truly means a lot to see Owen and Olivia smile when they receive post.

I would like to take this opportunity to say thank you to everyone who has written small notes to Owen and a huge thank you to Hannah for wanting to be Olivia’s pen pal, she is truly over the moon that she has a friend called Hannah and she tells all her friends that she has you as a pen pal. Owen was been so unpredictable with his health lately which has delayed Olivia writing back.

Thank you so much to everyone who sent gifts to both Owen and Olivia. A huge huge thank you to the extra smiles team at Post Pals, I can’t tell you how much the bath bombs were appreciated. Olivia said they really do make her feel like a princess and they were just so beautiful. Owen’s colour fizz are awesome too. And thank you for the awesome Easter egg too, we have just started Owen on a blenderized diet so a nice chocolate smoothie will be made with it and Olivia will also enjoy some. Florence and friends, we are so overwhelmed by that beautiful box you make for Olivia. The box itself was fantastic and thank you for all the gifts inside too, she absolutely loves everything. Thank you Toni, Karen and Conner, for Owen’s superworm book, we love Julia Donaldson books. Superworm is a fantastic book and Owen absolutely loves it. Thank you so much everyone.

I would like to say a huge thank you to everyone for your post, letters etc. I would like to say thank you to Bev too for sending me a card just to make me smile, it really did make me smile and it is nice to know you see Owen on his Facebook page. And a huge thank you to Skye for always checking on Owen, Olivia and myself. It is always a pleasure to hear from you. A big thank you to Milly and Fly as well as you always send Owen well wishes on Owen’s fund.

Update 4th March 2015

Thank you so much to everyone who sent gifts to both Owen and Olivia. The Minion top is awesome and Olivia’s box of sunshine was just fantastic. All the gifts are just wonderful. Thank you for absolutely everything.

I would like to take this opportunity to apologise if I haven’t posted much with cards, gifts etc. We have all been a bit up and down with winter bugs. Owen has been very up and down lately but he is managing to stay out of hospital. Thank you again, you are all such wonderful people.

Update 3rd Febrary 2015

I would like to say a huge thank you to everyone at Post Pals. The balloons that were sent are fab! Thank you for the wonderful cards, books and stickers too as we really do enjoy them.

Update 11th January 2015

Owen is going through a really good spell and the moment which is so great to see.

A huge thank you to all you amazing, wonderful and beautiful people for making us all feel really special during the festive season.

Thank you so much to all the wonderful elves, reindeer and Mrs Claus for the cards and letters from the North Pole. Olivia firmly believed all post was delivered via the North Pole Express and it was magical.

We have had a very happy and healthy month, normally Christmas is spent with Owen being poorly or just simply not himself but this year he was absolutely loving it. Owen absolutely loved listening to the Roald Dahl The Twits audiobook which sent him in to big chuckles and it was great to see. I was so emotional when we opened that and I can’t thank you enough. We also had fun making gingerbread, the house smelt wonderful and festive.

You all made us feel really special this Christmas, thank you all so much for everything.

Update 29th November 2014

Owen has been very up and down the past few months with bad seizures, sickness, more viruses, urine infection and now tonsillitis. This month has really took its toll on him. However, it was great to hear from school that Owen is using the eye gaze machine to make selective choices, which he is doing remarkably well with when he is in good health. He is making a lot of finger and pointing movements for choices too.

Thank you Milly and Fly for your postcards and letters, we like seeing your adventures, especially Olivia as she is dog mad. Thank you to April and the voluntary actia centre for your beautiful Christmas card. Your words did make me cry. Thank you Bailey and Lola for your Christmas cards, one arrived today for Olivia and Owen’s arrived yesterday. You are very cute. Thank you Skye for your little cards and notes for both Owen and Olivia. Thank you Susan Martin for Owen’s hugs card wishing him to get well soon, his card is lovely. Thank you Melissa for Olivia’s beautiful blingy card, we both absolutely love it. Thank you Dottie for your wonderful news letter, the steam train looked so much fun. Thank you Prancer for your Christmas letter that arrived with Owen and Olivia’s parcel yesterday. Thank you so much to Skye for all your wonderful gifts, we are having so much fun with the card reader. Susan Martin, I simply can’t thank you and Melissa enough with your awesome Mr men books for Owen and arts and crafts packs for Olivia. Olivia said you are amazing Melissa, amazing and thoughtful were her words. Toni, Connor, Karen and Snoopy, a big thanks as Owen absolutely loves the Nemo. A huge thank you for the parcel that we received yesterday from Prancer aka Kim Lawrence, we can’t wait to start the advent calendar.

I would like this opportunity to say thank you to Skye for her constant contact via Facebook to see how Owen and Olivia are doing, especially Owen as he has been poorly on and off now since the end of August. Thank you to Milly and Fly for checking on Owen on his Facebook page, Owen’s fund menkes awareness, please feel free to continue to post on his wall as all Facebook posts and messages are read to him. Again, I simply can’t thank Susan Martin enough, if you see what she does with the books she gives to Owen it just amazing. She makes his books all sensory, touch and feel, and sparkling – we absolutely love them. Owen’s face – well, there are just no words really – his face says it all, he loves them. Melissa always jazzes up Olivia’s package, it is always very bling. We absolutely love it. Thank you Toni and Karen, you guys are also amazing.

Update 29th October 2014

I simply can’t thank everyone at Post Pals enough. We are still having issues with Owen and his seizures and his post makes him smile. Thank you to everyone for the wonderful cards, we absolutely love them and a huge thank you for all Owen and Olivia’s gifts. The Mr Men books are always amazing from Susan Martin. Owen received a dvd from Toni, Connor and Karen, and it has been in his DVD player and watched ten times already. Olivia received the most beautiful tiara and we adore it, so a massive thank you to the sender as it is beautiful.

Update 9th October 2014

I simply can’t thank everyone at Post Pals enough. We have had a tough month with Owen and his seizures so I haven’t posted much regarding Owen and his post. I like to post happy pictures of Owen with his mail on Facebook.

Thank you to everyone who sent Owen birthday cards and thank you for the cards and post cards for both Owen and Olivia. They all put a smile on all of our faces. A huge thank you for all Owen’s birthday presents and for the gifts for both Owen and Olivia, they are truly amazing.

Update 30th August 2014

Owen has had a busy month with various tests and we also had our annual appointment at Great Ormond Street Hospital. He was becoming so lethargic and sparking seizures that we thought it was time he needed a transfusion. Test showed Owen’s potassium levels are low and his clotting is also abnormal. Despite then having potassium supplements his repeats tests showed his potassium was still low and his clotting levels were worse than the previous readings. However he is now feeling better and is ready to return to school next week.

I would like to say thank you to you all at Post Pals. Everything you do it truly amazing. The Mr Men books we received from Susan Martin are just amazing – they even make me smile, let alone Owen. The indoor beach was superb. We have had plenty of fun with that. All the gifts are amazing. Thank you so much for Owen’s letters and cards too as we really enjoy hearing from you. Olivia really enjoys her post too, especially the pick up sticks, stickers and tattoos. A huge thank you for her birthday cards and gifts too.

Update 22nd July 2014

Thank you so much for the cards and postcards for Owen and Olivia. They really do enjoy getting post from you all. Thank you for all for your wonderful letters too as we take great pleasure in reading them. Again, a huge thank you for all the gifts. The Mr Men books are brilliant and Owen adored his balloon.

Story written 2013

This is all on top of the fact that he still isn’t talking. We have been invited to a speech and language course to help us to try and develop Finley’s language and understanding. We also attend sing and sign toddler group on a Thursday to try and help him to develop or sign or just be able to communicate his needs to us.

It is all just so much more than we are used to as parents, we can deal with the tube feeding and the gastro surgery but this is a whole new and scary ball game.

Update 14th April 2016

Finley and his family are now moving on from Post Pals, we would like to wish them all the best for the future. Finley’s family said this:

A thank you for everyone who has sent post to all three children over the time that they have been a part of post pals. We are really grateful. We have also saved pretty much every card and letter that we have received over the time we have been receiving post, they are in scrapbooks so that Finley can look back over them when he is older and remember everyone who took the time to make him smile.

Update 6th February 2016

We are all just getting over a sick bug here. Awful bug made worse when you are poorly and can’t be sick.  He was wrenching and floppy. Was sent home from school even after the bug because he had fallen asleep and was too floppy to sit up and do any work. Then slowly passed it around his Dad and then Jack and Olivia.

All looking much better though now, thank God. Finley went to hospital for a pre op this month, for some reason he was referred to the local day surgery unit instead of the children’s hospital. We got there and filled the forms out for them to say no chance of being able to have surgery there. So waiting for another preop and then date to come through.

Update 8th January 2016

First we would like to say thank you to everyone who sent a Christmas card, post card or gifts to Finley, Jack and Olivia this Christmas. Huge thanks to the elfs and to our Mrs Claus for amazing reindeer post. You all made Christmas that bit more exciting.

December has been up in the air. I was back in hospital and had surgery just before Christmas. This meant that Dad had to take Finley to the hospital. Not something that he is used to. He did a grand job. I think sometimes he doesn’t get the praise he deserves but he kept a house running, kids well and medicated all by himself. He managed to take Finley for his tube change. A milestone we have never achieved before as he has usually pulled it out or the Jej tube has migrated back into his tummy before the 6 months is up but he did it. He assured me that he was a brave boy and that he needed a big treat when I was better.

He has been seen by urology just before Christmas for some minor issues and will be having some surgery in the next couple of months.
He has also got to go in on Tuesday for a MRI brain scan under anaesthetic to check on the pressure in his brain. Fingers crossed for no change will be appreciated.

We are all just trying to get back into routine after Xmas. Day to day treatment stays the same regardless of the day but the days seem to fly by quicker at Christmas and deliveries get lumped together and its all a faff. Back to reality now.

Update 1st November 2015

Daddy had to hold down the fort at the beginning of November as I discovered I had gallstones. This started with immense pain and then I turned yellow and was admitted to hospital on the spot. As a nurse I make a terrible patient. I kept taking all the old ladies to the loo and trying to make my own bed. I must say Daddy did an amazing job. He cleaned better than me and managed all tube stuff. He did ring every morning to ask what Finley took to school but I’ll let him off for that. I’m home now but still feeling poorly. On the urgent list now for taking it out. Finley had a few appointments. They have noticed that he has developed a latent squint. He has needed new glasses and he has been having some jerky movement episodes, because of this he will be having a repeat MRI scan on his brain to check that the cyst isn’t putting pressure on anything. Hopefully it’s just precaution. We are looking forward to Christmas. Thank you for the cards that we have received already.

Update 1st October 2015

Finley has settled at school now, they are actually working with me and looking after him. We had issues with high gastric output for a few days early on in the month. Think it was his body being ready for his cycle meds. These are for bacterial overgrowth. They can be harsh meds but they work for Finley. His output slowed and he didn’t bloat as much. We nearly ended up inpatient with another aspiration chest infection but managed to ride it out at home with Finley being a superstar with his inhalers and letting us increase them as needed. We also had an adventure this month. We went to chessington world of adventure to see their Halloween weekend. We met up with our friends then we went to the Harry Potter studios on our way home. Best weekend ever. We would love to go again it was that good and even Finley loved it.I was such a proud geek mum when he asked if wingardium leviosa would help us put the Christmas decorations up. He has a cloak and instead of a wand used a sonic screwdriver. It’s incredibly cute.

Update 1st September 2015

Finley started back at school this week in a new class, a big boy class. We have had a couple of teething problems due to lack of training, such as giving him thin fluids when he aspirates. Then him ending up with a bad chest for the first week back. A case of not reading the health care plan properly but we are working on that and will get there. I think it’s always the same. So far he has enjoyed the new class. His new teacher is great and the support worker used to help Olivia and so isn’t scared of tubes. They are working extra hard with him on his reading and his number recognition. We know that these are the things that can be affected by the cyst in his temporal lobe.

Update 11th August 2015

Sometimes life is a blur, although it seems to have gone by so incredibly slowly some days, this month Finley has turned 5. My incredible boy has come so far and overnight has materialised into a cheeky, giggly little monkey.

He had a great day. He chose to go and see the fish at the Sea Life Centre, in Manchester. We have Merlin passes so this is a regular trip out for us. The Legoland Discovery Centre is practically next door too, so we can do both in a day. Lots of fun was had by all.

We also had a week at the sea side and it was so hard. I think we forget that a holiday for families like ours aren’t always a relaxing escape, it’s just day to day life made complicated by being in a small space away from home.

Finley spent the first couple of days/nights with group, he wasn’t tolerating feed, wouldn’t have anything orally and was vomiting up all of his meds. He was then spiking temperatures and ended up with a chest infection. I’m not sure if he aspirated on vomit the days before. Holiday was then spent trying to get meds into him and feed and keeping his temperature down. Still, we built a sand castle and had fish and chips on the sand. Well, the rest of us did. We were very happy to get home.

Finley seems to be struggling recently with food, he is having less and less and then what he does eat is things that melt to nothing or to liquid, like melon or strawberries. Anything else is just refluxed back. He still has a cough but I’m hoping that it is going to go soon and he can catch a break.

The dietitian appointment showed that he needs his feeds increasing too, as he isn’t gaining weight like they want him too and that is this month’s challenge. Hopefully we can increase without upsetting him and making him sick all over again. Wish us luck.

Update 6th July 2015

Our admission went ahead last month. However, in true Finley style, he pulled his Jej tube out the week before we went in and ended up admitted. They couldn’t get it in for the jejunal tube replacing so we were in on iv fluids. They put in a nasal jejunal tube which is literally a tube that goes up the nose and all the way into the bowel. He was very brave and kept this in until he could get his proper tube back in. It was the Friday before they could do this and then we went to London on the Sunday for tests. We still don’t have any answers from them yet but I’m sure we will in time.

Luckily he was feeling all better in time for his school trip to the cinema. He really enjoyed it and was excited to go on a coach.

We were also healthy enough to go to the Post Pals party in Surrey. Like last year, it was absolutely amazing, and we want to say a huge thank you from all the family for the work that goes into it.

Update 31st May 2015

We are gearing up for an admission to the Royal London next week. They are finally going to look in to why Finley keeps having internal bleeding. Finley knows that he is going to London but as of yet doesn’t know that he will be going to theatre or having to have tubes in his nose again for a day or so. We will tell him closer to the time but well wishes would be great for being brave. We have had a fun day out today going to Blackpool tower circus and the sea life centre for treats before our trip down.

We are also trying to sort school out for the next year. We need new teachers trained and risk assessments for P.E. I have to step back sometimes or I’d go mad. School miss the point of what we need sometimes.

Olivia wanted to say a big thank you to Becci who has been sending her monthly project gift. She really loved it. We are really grateful for all our post so I just wanted to say thank you.

Update 1st May 2015

Finley has continued to have bleeding from his stomach and our local hospital don’t seem to be interested at all, so this week we are going to see the gastro team in London and hopefully they can help him out. It’s awful for us to deal with him in pain and struggling with no plan to help. We are really hoping that we can get some kind of plan from them to find out where the bleeding is coming from and how to stop it.

He also seems to be coming down with something. There has been colds and sore throats going around and we are really hoping that it isn’t anything to worry about and that it stays off his chest so we can get down to the appointment safely.

Update 19th April 2015

Big news this month is that Finley finally got a hospital bed. It will help us so much. Practically to save us from hurting our backs lifting him or bending to sort him out through the night. Hopefully it will allow us to get more sleep by getting him in to a better position so he doesn’t choke through the night like he has been doing.

We also had a trip to the dentist. He has a little enamel that is bunched up. She thinks it’s probably medication he has been on while the tooth has come through but it could be him grinding his teeth.  Time will tell.

Gastro wise we are getting really annoyed as nothing has happened since our last update. No one is taking responsibility for him and arranging any of the tests or trials that he needs. In the meantime Finley is still having fresh blood draining from his stomach. He is still getting pain and bloating and horrid mucousy stools. This mum is getting more and more frustrated about it all.

On a lighter note, all three children have loved their post the last couple of months. It really does make a difference and cheers them all up. You should all have a warm fuzzy feeling for sending it.

Update 20th March 2015

Finley has been in hospital this month and worried us by having bright red bleeding coming out of his stomach. They think it is acid damage from the persistent reflux that just won’t stop. We increased his reflux medication and this has helped. We are now chasing up the doctors to try and get his scopes done to have a good look.

He needs a long list of tests but London and local are trying to decide who will do these and when, so in the mean time Finley struggles.

He very often (too often) gets a lot of pain in his tummy and this along with bloating makes him cry and no one will give us anything to try and help him. We have to helplessly listen to him screaming and shouting when we can’t help him. It makes my heart hurt. I hope they pull themselves together soon and do something or I will be putting in the biggest complaint.

Ending on a positive though. His new big boy bed is ready! He will finally be comfortable in bed.

Update 31st January 2015

We have had our second opinion gastro appointment at the Royal London hospital this month and I was really nervous. I tend to hide a bit when I’m worked up and had been the weeks before. We just really need some answers.

Every night for the last two weeks Finley has cried that his tummy hurts and he cries in his sleep. His tummy is distended a lot and he is begging for pink medicine or a dressing on his tummy. It’s heartbreaking and very tiring. We need a plan, some answers, and I want a happy child again. No one should have to live in pain, especially not a child.

I felt unprepared for the appointment like I should have a quick medical history ready for the doctor but with everything that has gone on with Finley there isn’t such a thing as quick. We got lost in the hospital, then I had to stop and give first aid to a lady who was having seizures until the crash team could get there. Finally we got there though and on time. We didn’t get to see the doctor we thought we were seeing, but it was still one of his team in though.

They took a very thorough history which took ages. In short, they don’t know what’s going on and they feel he is a complex boy. The doctor wants to talk to the doctor we were meant to see and then they will arrange the best tests to see if they can find out what’s wrong. He did say they do see Ehlers Danlos syndrome kids that do deteriorate and often it’s hard to reverse. Even though in some cases they improve with age, it is so hard for them to tell which camp Finley will be in. Finley was very cooperative. He scored 9/9 on his beighton hyper mobility score. No surprise really and it seems that he has EDS. They said the basics are scopes and biopsies and that he suspects he they might want manometry, but there is a few months waiting list.

All in all it was a good appointment where I felt listened to and they took on board my frustrations. They agree that the bloating can put pressure on a fundoplication wrap which would explain why Finley’s is herniated into his oesophagus. It could also explain why he couldn’t have a button Gastrostomy as they burst all the time.

Jack has also had a problem with his feeding tube. The tube had suddenly got 3 or 4 inches shorter and he could pull it back out as it hurt too much. He then hid it from us until he was in so much pain he couldn’t stand up properly. We phoned our hospital to tell them it isn’t right. I suggested to the surgeon on call that I think the disk holding the peg in had been digested past the pylorus and into the duodenum. He told me that this couldn’t happen. So I pointed out that it had once before. He spoke to our surgeon who agreed with me and told us to bring him in. Jack is so anxious of hospital and doctors that this wasn’t easy and it was really emotional for me. He was saying if you loved me you would let me stay at home.

On arrival they saw the state he was in and immediately called in a midazolam prescription. This worked really well. He was zonked out and doesn’t remember them pulling the tube back through into his stomach even though it’s pretty brutal. This I am thankful for. Then I had to sit next to silly drugged pre-teen as he came around. That bit made me laugh out loud.

Finley joined in on this with an eventful day here on Thursday. First our car wouldn’t start so we were late for school. Then I had to rush to work an hour late. I managed one patient visit and we get a call from school saying that Finley had pulled his jejunal tube out. Marvellous. My mum rushed to pick him up from school and I rushed home from work and we then spent the rest of the day at the hospital getting the tube put back in. Finley was super brave and kept still, looking at the X-ray screen of his tummy while they guided the new tube in. He had quite a sore tummy that night and going into the next day. It’s normal post placement and we gave calpol and cuddles. He has been back to his usual self today thank goodness.

Perfectly timed was a lovely gift from Post Pals, the children all got a wonderful balloon that had confetti in. Finley absolutely loved this. He is very much a balloon person, he spent days batting it around the room.

Also the big news in our house is that we are getting a bed!!! Does anyone remember us having the OT here a while back about a profiling bed for Finley? She was appalling and told lies and surprise surprise he was declined. We put in a complaint through pals about the OT in the end. It worked for us as the head of services rang and I told her how desperate we were. Apparently the OT was out of her depth. She hadn’t had to apply for a bed for medical need before and panicked a bit. They took Finley’s case to the big joint meeting they have to see if anyone could come up with anything to help and they couldn’t so the panel have reversed their decision and we will be getting a big boy bed. It’s really ugly looking but I don’t care. We might all get to sleep without Finley choking and strangling himself with his tubing. I can’t wait.

Update 16th October 2014

Finley is thankfully getting over chickenpox now. He is still scratching at a couple of spots but much better.

He has started school this term too and is full time. He is shattered as it’s a long day and it’s taking some adjusting for both Finley and me. It drives me mad that the school don’t give me enough information that I ask for and feel like it’s two sides and we argue.

He has had new peidro boots too, they are really high boots that hold his ankle so that he can’t get up on his toes to walk. They have taken some getting used to as they bruised his legs at first. They have been padded now and he is wearing them.

I spoke with genetics today. The Ehlers danlos syndrome geneticist. They have confirmed a partial diagnosis of ehlers danlos syndrome type 3 which is the hyper mobile type. We know that this doesn’t cover all of Finley’s issues and we will be still looking for them but it is nice to know that we have something that we can tell people.

His Microarray blood test has also come back and he has a variant of unknown significance on chromosome 14q21.2. They have said that they can’t find a syndrome on this branch so won’t be looking into it further unless other kids with similar symptoms come back with a similar variant. So thats interesting but just another little add on to the list of quirks that Finley has.

We are still waiting on the results from Finley’s blood tests and EMG tests to see if it shows any myasthia muscle weaknesses. Just more waiting. We have got several big appointments coming up that we are getting medical history together for. Rheumatology, neurology and then our appointment is through for the Gastroenterologist in London. A really big journey for us for an appointment but I have high hopes that they can help us.

Update 2nd August 2014

Hi, sorry it has been so long since our last update. Finley had still been having a lot of problems with his gastro-jejunostomy tube. He had previously had MRSA in the tube and it continued to cause problems so in June we had the tube re-sited. They surgically closed the previous stoma and cut out the affected tissue and then put a shiny new tube in its place.

Two days after this surgery we were in a bad car crash, luckily apart from some burns and bruises we all walked away, we just had to go via the hospital to have them check over as Finley was only two days post-surgery. That and the fact a 28 ton wagon doing 40 miles an hour hit us. We are still in a courtesy car now while we wait for ours to be repaired. They weren’t sure if they were going to be able to fix it at first but it was a brand new car (three months old) so was worth it.

We did manage to make the Post Pals party though and this was amazing as always. We met other Pals families that we have been talking to online or have met previously and the kids were spoilt. We all adored the animal show that was on and the children got to hold and interact with so many different animals. I even held a spider – brave at the time, but now I can’t look at the photo as I shudder! We drove home via Warwick castle to break up the journey and the children got to try out archery – even Finley had a go even though the bow was twice the size of him. He was over the moon that he hit the target.

Since surgery, Finley’s new tube had been very sore and much more painful that it was before. We hope that this is just because it is new but then on our sunny beach holiday to Scarborough this last week Finley came home with chicken pox. We couldn’t believe it, we had made sure that we had a week free from hospital appointments and from therapy and then he gets chicken pox! Poor boy is covered in them. He is doing really well but his new stoma site looks terrible now as it has spots on it. I’m hoping that they clear up soon.

We have some medical appointments and tests coming in the next couple of weeks, one could actually rule in or out a diagnosis for us. They are looking at a partial diagnosis of congenital myasthenia syndrome. This is relating to the trouble Finley has always had with low muscle tone, ptosis, trouble feeding, chewing, aspirating, respiratory distress and excess saliva. It would be nice to know either way. He is waiting for an EMG test but we are asking for it to be done with sedation as it isn’t very nice and involves putting needles into the muscles and then giving them an electric pulse to check the messages that flow between. I cant see Finley letting them do it otherwise. Then he has blood tests to send off to the specialist hospital in Oxford and urine tests too.

Finley’s big brother Jack will be going into hospital as he is having his feeding tube changed on Monday. He is very anxious about this and it never goes smoothly. He will be having a general anaesthetic and will be home the same day but he is very scared about it as hates hospitals and needles and is distrusting after being through this more times that he can remember.

First though, we have a birthday boy. Finley, our brave, beautiful, cheeky, loud, adorable boy, is 4!! He really has come a long way since he was born, that tiny preemie who spent his first days on a ventilator fighting for his life and has been fighting ever since and he is amazing.

We are really grateful for all the post that we have received for Finley, Jack and Olivia. It really is appreciated and makes a massive difference to our day. It can make a lousy day happy again because they get a card or letter that makes them smile. Thank you.

Update 30th April 2014

Finley is still having problems with his feeding tube. The stoma is too loose and this means that acid is leaking out. When it leaks out it burns the skin and makes it very sore and painful for him.

He is still growing staph in his swabs and also recently had a swab positive for a yeast infection. It has just been endless. We have been in touch with Finley’s surgeon and they have decided that the site needs to be re-sited. This means removing the whole tube completely and starting again in another location on his stomach. This will hopefully allow the skin to heal up. We are just waiting for a date for this now.

We just had an appointment for eye clinic to check for any pressure in his brain as he had been head banging and rubbing his eyes all the time and the cyst that is in his brain is just behind his eye so they keep tabs on it. As far as they can see it looks reassuring.

We have neurology appointments coming up to check the results of his microarray and other tests that he had done. We found out that there is a deletion on one of Finley’s chromosomes but unsure whether this is related to any of his issues/a chance for a diagnosis or not. We will have to wait and see.

Good news today is that Finley got a school place for September. We got our first choice which is the school he already attends the preschool in and his sister goes to. This will help transition as it is the same staff and building that he is used to. He just has to learn to stay all day. It’s great as the staff already know him and have some experience of looking after him. They will have to up their game though as twice as much time there means twice as much care. We will start getting them ready for that as soon as our community nurse has arranged a meeting to see what support will be needed for when he is there a full day.

Update 9th March 2014

Since our last update Finley has had two emergency tube changes and the last one last year was a long job. As always, we had to go into hospital for iv fluids to keep Finley’s blood sugars up in a good range. We had the tube replaced and it was in angioplasty theatre so Finley got the surprise of his mummy dressing up in scrubs. It seemed like an easy placement but when we tried to start feeds it didn’t go well. Finley was retching, floppy and in pain, so we had to stop them almost immediately. The tube placement was checked and was fine but it took a week for us to be able to get full feeds running.

In November, Finley’s reflux was awful and he ended up in the hospital having aspirated. We were sent home with inhalers to try and clear his chest which have helped him when he gets wheezy but sadly he is still refluxing a lot and his medication has only limited use.

We have lost our gastro doctor as well since our last update. We went for our appointment and it was a shambles; the doctor had no notes, didn’t know what was going on. They suggested that Finley might need a surgery that he had already had and ended our appointment with ‘you seem to be doing a good job so keep going, he might grow out of it’. He didn’t realise that it wasn’t just reflux that was going on and didn’t seem bothered so we won’t be seeing him again and are on the look out for a good gastro doctor who will actually take time to listen and try and help us.

We all had a great Christmas at home, lots of noise and gifts. We absolutely loved the elf parcels that we were sent from the wonderful Post Pals volunteers and I was humbled and a little emotional about the effort that had gone into the gifts and how much love there was around the children this year.

This year so far has been a bit of a blur, it seems to have flown by in a blitz of appointments. Finley has been seen by wheelchair services, who are going to get him a chair that will support him when needed. He has had new boots and new insoles made. We have also seen a very lovely neurologist who was actually interested in our history and wanted to look into congenital myasthenia syndromes for Finley as he seemed to meet some of the criteria for this. She was surprised that with three similar children that we weren’t followed by genetics for studies and was arranging this for us.

We have been drowning under Disability Living Allowance forms. For those who don’t know, you have to fill out a 43 page form detailing everything wrong with your child and everything you need to do for them. It is a miserable form to fill out and then provide evidence just for them to scrutinise everything. I am unlucky in that all three of the kids forms are due in the same 5 month period so I have back to back forms to fill out. My poor printer.

Finley has also developed a new trick. Every so often his circulation to his fingers, hands or feet just stops, it just goes drip white and waxy. It reminds me of raynauds syndrome but he isn’t always cold when it happens and it doesn’t happen every time he is cold, so it’s a mystery. It’s just another thing to bring up with the doctor when we see them next.

More recently finley has been having a lot of problems with his feeding tube site. The actual stoma around the tube rather than the tube. It has been sore and leaky for 3 months now, getting over granulated and bleeding. Six weeks ago it was swabbed and we found out that Finley has MRSA. Just around the tube site. It has been a nightmare. We had a week of clarithromycin to try and clear it and have been using anti-microbial dressing on his tummy but it has still got worse. It is now breaking down as the hole is getting bigger around the tube causing acid and feeds to leak out which is then irritating the skin. Our nurse has just re-swabbed it yesterday and we are waiting to see if it is still MRSA and if so what we need to do. There is talk of having to go in for iv antibiotics but we are hoping to avoid that if possible. We need to get it better as Finley has started waking up through the night crying that his tummy hurts and that it is itchy.

Update 2nd November 2013

We have had a nice lull in appointments this month, it has been nice to not have to run around frantic. We did manage to speak with the disability social worker this month regarding respite that we have never had before. Whilst she was here she was asking about school and I told her about the concerns that we have about supervision and about them not changing his nappy. She has spoken with school and called a meeting with them about Finley to discuss all of this. I’m feeling nervous and guilty now but will have to put my big girl pants on and get on with it.

We finally heard from neurology and they will be seeing us next month along with a follow up gastro appointment and getting Finley’s eyes checked. I have a heart scan booked for myself next month too. So it’s stepping back up again but it was good to have the break.

Update 29th September 2013

Finley started school this month which has been so nerve racking for us all. The school didn’t realise what they were getting. This on top of several hospital admissions has made a really hard month for us all. School don’t know Finley yet so are slowly trying to pick up his quirks and ring me in for little things. I still worry sending him everyday but I think after this month they have finally seen just how quickly Finley’s health can change.

He was at school a week last Wednesday and had a reasonable day and by bedtime was in an ambulance to the big city hospital. His jejunal feeding tube had displaced and his gut had rejected it back into his stomach so he could no longer be safely fed. This led to iv fluids and a trip to radiology to have it replaced.

Saturday we had a trip to London, whilst on the train the end came off his gastrostomy tube and took the jejunostomy tube out with it. We were stuck on the train in the middle of nowhere panicking that we needed urgent medical treatment. Thankfully a friend told us to go to UCLH hospital in London. Here they placed an NJ tube which is a tube from his nose right down into his bowel. This tube took 10 hours to place, lots of pinning down and pushing it further into his nose. Every 30 minutes they came to push it in. Finley needed yet another iv. Three attempts to get access leaving him with three big bruises.

We managed to leave the hospital the next day with the NJ tube in and got to the wonderful believe in magic party, which was the highlight of the month really. He was draining loads of bile from his stomach after it had been upset so much. This caused a problem for school as they couldn’t manage it and then on Wednesday night the NJ tube came out again, requiring another mad dash to the city hospital for iv fluids. We finally managed to get out gj tube put back in on Thursday and Finley was so so brave. He laid and let them replace it, probably desperate to get home and no more cannulas.

I’m definitely hoping that next month is better for us all. It Is so hard on Finley to have to go through all of this and I was so tired from staying up 3 nights in a week. The big kids were upset that we had to leave them again and tired because they had to get up early to go to my sisters so that my husband could go to work. It hits everyone when someone is sick.

Our post has kept us all going. It is lovely to get a smile when life is hard.

Update 16th September 2013

I have had an absolute nightmare this month trying to get everything ready for Finley to start school. Trying to pull our medical team together to train and speak to school and school haven’t made it very easy. They seem to be keeping who his keyworker is a secret. Not sure if this is a ploy so that we don’t know who to harass!

Finley will be starting school without a statement as we were told that because his problems are medical and not educational then we need to collect evidence of need. This is making me want to panic and wrap my boy up. Our social worker wasn’t happy, yet everyone else keeps patting me on the back and telling me he will be fine. Or that all mums are upset when their child goes to school.

Finley has been miserable with reflux this month. We found out that his fundoplication surgery that he had to stop his reflux had herniated into his oesophagus making him uncomfortable and making his reflux come back. This will need surgery but because it is a bigger surgery to take the wrap down and build it up again, they would like to hold off as long as they can, so we have started back on reflux meds and will see how long we can get them to work for. I feel his pain, I hate heartburn.

We even managed a small caravanning holiday this year. We just went to the local seaside so we were close to home but the weather was sunny and Finley loved the beach. We made it through with only minor issues. We did have one trauma but it was Olivia. She picked Finley up and caught him funny and he pulled out her feeding tube and it fell onto the dance floor. Queue one screaming Olivia, one very confused Finley and a slightly green first aider who had to see me putting it back into her tummy and wrapping it up in a bandage until we could get back to the caravan to put the new one in. Once back in Olivia was fine and danced the night away. Brave kids I have here.

Finley would like to thank everyone for his birthday cards and gifts. He had a great birthday.

Update 24th July 2013

We have had a month of trying to get two children into school. Finley starts the school nursery in September and they aren’t used to dealing with children with complex medical problems. Jack, my eldest, is also starting high school and he will be going with a feeding tube, adhd and seizures and I don’t think they are used to any of those either really so lots of paperwork and stress for me.

We did have the fantastic opportunity of attending the Post Pals party and we all had a wonderful time. It was lovely meeting Vikki and Kate, other Pals and talking to other parents. Finley really enjoyed singing hands and we sang along. He had a roll in the ball pool, cried on the bouncy castle, even licked the icing off one of Holly’s dads wonderful cupcakes. We will forget that he also fell over and bust his lip and bled all over. The big kids loved everything from the big slide to the face paints. Both had several tattoos by the end of the day and oh my gosh, the raffle! The kids came away with all sorts and then amazing party bags.

I think a huge thank you to all the staff and volunteers is in order for all their hard work. A sorry to Becky Rideout for Jack repeatedly asking her for batteries for the remote control angry bird.

We had lovely weather the whole weekend and finished the weekend off with a trip to Chessington on the way home. We had some very happy but very tired children. Thank you.

Update 9th June 2013

Finley has been in the hospital for the last week. The little monkey managed to pull his jejunal tube out. He was chewing it and we think the end fell off.

Our local hospital can’t replace these tubes, so off to Leeds we went at 10pm.

We have a problem with Fin in that we don’t know why he needs to be jejunal fed, he has no diagnosis that explains why he is like he is or why his tummy doesn’t work. This means we have a hard time trying to explain why he needs the jej tube and this time was no exception.

The reg doctor comes around at about 2am trying to tell me that this was obviously a great opportunity to test Finley’s tummy. Giving it the whole speech of it worked for two years and we don’t know why it stopped working. I did tell them that nothing had changed and the only reason Finley had been doing well was because we had started to jej feed and vent the stomach, but what do I know? Gastrostomy feeds were started and for a couple of hours things weren’t too bad but suddenly Finley started sweating, he was crying in pain and he went floppy in my arms. It was awful. Eyes rolled and he started retching. Luckily the nurse was with us and she called the doctor.

We emptied all the feed from his stomach and were able to leave his tummy on free drain. He was getting more and more sweaty and his heart rate was racing. He was having a hypoglycemic attack with sugars at 3mmol/l. Finally the reg came back along with our much loved surgeon. They ordered the feed to be stopped and left off until the jejunal tube could be replaced. Fin had to get iv access and spent the next three days on fluids. He was getting glucose to stop the hypo and then extra fluids to replace what he was loosing from his g tube. All the rest of the day Finley was so low toned that he couldn’t even sit up in his buggy that has extra support. It was like having a newborn all because no one listened to me.

He then went to radiography to get his jej tube replaced. This is scary for such a young child but Fin was a hero. It’s a huge X-ray bed with the X-ray machine over you that moves. Big screens next to your head too. Then everyone, including your mum, dressed up funny in lead clothing, making you lay still. I’d be frightened, yet my 2 and a half year old hero laid there. He cried a little and got hot but he didn’t move. He let the staff do their job and got back to the ward. We had a slight mishap though as the tube placement hasn’t gone as well as we hoped and within 20 minutes of starting out feeds the jejunal port came out and the tube fell out. This was heart breaking. Finley had to go back on iv fluids and we couldn’t come home. It also meant that we had to go through the whole scary X-ray machine again. Again, Finley did great and this time mummy made sure the end was secured properly and as soon as feeds were running again we started packing. I managed to speak to our surgeon whilst in there and our concern of still not knowing what’s going on with Finley’s gut and he has arranged some contrast tests to have before we see a gastro doctor to try and look into the issues more. And as awful as it was to see, the hospital have seen what happens when we try and feed Finley into his tummy.

It has been so good to be home and although both Finley and I have come home with chest infections, his tummy has been more settled and we are very glad to have our much needed jejunal tube back in place.

Update 29th April 2013

We have had many appointments this month, mostly for Finley and some for his brother and sister. Lots of extra bits to add to our list. We were assessed by a new physio and a rheumatologist that were surprised with just how hypermobile he is and added some official words to our list of symptoms such as global hypotonia and global hypermobility. It was shock to add sensory processing problems, proprioception dysfunction, poor saving reactions and depth perception, balance and coordination difficulties, poor core stability and muscle power to maintain erect posture with challenging activities, difficulty in motor planning, judging distances, negotiating obstacles etc and poor foot posture. They don’t change Finley as a person but add extra words when explaining what is wrong with our little man.

He has needed three different types of antibiotics this month to try and clear an infection in his jejunostomy tube. We need to clear it as while his body is fighting the infection he is reacting to everything again. His face is red and angry all the time. His tummy is permanently pot bellied now and he has been getting a sore bum. We are still waiting for a new gastro referral to try and get to the bottom of why his tummy suddenly stopped working and that he started to react to things that he hadn’t ever had a problem with before.

We are also still waiting on a cardiology referral so that he can get an ECHO done of his heart to check for floppy heart valves. He already has persistent tachycardia but needs this scan doing soon.

We have therapy services coming out Friday to see if his current seating is suitable for him and will be asking if there is anything else available to help us at home.

We have been so overwhelmed in a good way with the post that we have received as a family. It is such a great feeling that people have thought of us and we’re so grateful for the smiles that have been put on the kids faces. They have had so much excitement opening mail. It makes life a bit happier. We are very grateful to everyone who has found the time to send a card or gift to Finley and his siblings this month. It is amazing how much they cheer them up on a bad day and we have been humbled by peoples generosity. Thank you everyone.

Story written 2013

Theo made rather a dramatic entry into this world 4 weeks early in October 2008… right from the start we knew he was trouble and would never take the easy road in life and we were apparently right!

Right from the start we had issues with his feeding and by 3 and a half months old we were referred to a local paediatrician who diagnosed Reflux. By 8 months old Theo’s problems had worsened dramatically and he was vomiting copiously, had cut out his solids diet and barely touched milk. He was put on a high calorie milk but he could only manage a tiny amount which would quickly resurface across the room. At this point he was referred to a surgeon in Leeds and when he was 10 months old he underwent a Nissans Fundoplication and had a gastrostomy placed. Everyone thought this should have been our cure, that our problems would be solved… well they weren’t, in fact, his issues seemed exacerbated.

His symptoms gradually worsened and in March 2011 he was diagnosed with multiple food protein intolerance and had a large amount of the food groups removed from his diet by his doctor. Theo still continued to deteriorate and his symptoms worsened. He suffered from severe bloating, reflux, facial rashes, facial swelling, problems with his bowels and vomiting bile.

In August 2011 Theo was referred down to Great Ormond street hospital and in November he was seen for the first time. Theo had scopes in December and commenced on steroids in January 2012. Unfortunately he didn’t respond to the steroids and was admitted to our local hospital in February. They tried various treatments but Theo continued to worsen and lost a lot of weight so in March 2012 he went to Leeds and had his gastrostomy changed to a gastro jejunostomy and they removed foods totally from his life.

Throughout this time Theo took everything in his stride and continually charmed all who came into contact with him, his bravery was amazing. He commenced on jejunal feeds and did well initially but then the inevitable happened and he went downhill again, he continued to lose weight and his hair began to fall out.

In June he was yet again admitted to Great Ormond Street and went through a set of tests which really were terrible for both him and for me to watch. These tests showed he had problems with his gut motility and they arranged for him to go back in September for a test which required surgery. Unfortunately Theo didn’t do well post operatively and required total parental nutrition for a short time to boost his system while they built a modular feed through his jejunal feed. They eventually managed to wean him off tpn and get him onto full feeds down his tube. A supposed few day admission had turned into 6 weeks but we walked away with a diagnosis and now knew Theo suffered Chronic Intestinal Pseudo Obstruction and has Eosinophilic gut disease underlying.

Currently things aren’t going well for Theo and his health is deteriorating further, we have been in our local hospital recently and are now awaiting to see our doctor at Great Ormond Street. We are hoping for a new plan for Theo.

Theo is an amazing little boy and with lots of love, laughter and cuddles, and we do our best to embrace life between the hospital admissions and appointments.

Update 6th August 2014

After a long think we have decided that now is the right time for Theo to move on from Post Pals. We have been so grateful for the immense support from yourselves and your volunteers and in the very dark days stuck in hospital it has meant the world to see a smile from Theo due to a card or gift sent from someone.

We will always be grateful. Keep helping the children and doing an amazing job!

Love always,

Verity, Nathan and Theo xxxxx

Update 11th April 2014

I have to firstly start with an apology… it has been an awfully long time since I updated Theo’s page and for this I am sorry. It has been a tough time and though I know this is no excuse as people go through far worse then us, it just seemed I couldn’t do it… I couldn’t bring myself to put it down on paper or at least on the computer.

So, last time I updated we were awaiting a prolonged admission to Great Ormond Street. This was to remove an embedded gastro jejunal tube and also to look at Theo’s bowel and how it was (or wasn’t as the case was) working. We went in under the surgeons and as it turned out his tube was so badly embedded in his abdomen that it required major surgery. He was in theatre about 5 hours and came out very poorly and with a central line inserted to give him complete gut rest. It turns out it wasn’t that anyone had done anything wrong but Theo had reacted to the tube and because of this he could never have that tube again. He would move onto a Mickey Gastro jejunal button once his little body had time to heal (this was 6 weeks later). Theo remained very poorly and on strong pain relief for a while and also had TPN while his gut healed.

Once Theo had begun to recover and his gut had rested he had a nasojejunal tube inserted, this in itself was incredibly tough for both him and for me to watch this process. It wasn’t easy but once he finally got used to the tube being there we began feeds again into his small bowel and gradually reduced the TPN he had been relying on. This again was tough for Theo, it created pain and suffering for him and his gut really wasn’t happy. We did finally manage to get him up to full feeds and then the next part of the admission began.

We then moved onto trialling various medications to try to make Theo’s large bowel work better. The gastroenterology doctors tried various combinations of very high dose laxatives (to be fair they would have made a grown adult cry at the doses they gave) and again he showed his strength and bravery and endured each part of the process. The drugs made him hurt and gave him a lot of pain but we knew we had to try them throughly.

It was eventually decided that these just weren’t working and we were told his only option was surgery. So after 10 weeks in Great Ormond Street we were allowed to go home in the short term and await the surgeons to move on with the next part of the plan. We went back to GOSH after about 2 weeks and saw the surgeon who explained our options and arranged for Theo to go in for a stoma imminently. We went home scared but relieved we finally knew what may help Theo to be more comfortable.

We went back into GOSH for his operation on the 4th November due to the fact Theo cannot maintain his blood sugars off feed, so he commenced iv fluids and went to theatre on the 5th November. He came back 2 hours later looking very comfortable on a good combination of pain relief for him. He was utterly amazing and we managed to reintroduce his feeds with minimal fuss and left a week later.

At home we began settling into a new routine and Theo was doing really well. There was a lot for me to learn and added procedures added into our day but Theo was happier which was what it was all about.

Theo then ended up having an emergency admission to GOSH in December after his new stoma obstructed. It was very stressful after he appeared to have been doing so well. He was on iv fluids for a few days and then, yet again, we slowly introduced his feed again. We managed to get it back in with a few issues and a week later we were on our way home again.

We were home just in time for Christmas which was lovely. We had family up to stay and Theo was utterly ruined by not only us, but by his wonderful Post Pals family. I want to say thank you so much to each and every wonderful volunteer who sent a beautiful card or gift. Theo loved opening every one and the lovely smile it brought was amazing. I am truly grateful to you all.
Since Christmas Theo has been managing to go into school all day with the support of his teaching assistant. He throughly loves school and they all adore him… how could you not!? He has lots of friends and they all fully accept Theo for being him.

He is now hooked up to his feeding pump 24 hours a day and 2 feeding pumps overnight as he loses so much fluid from his stoma we have to closely monitor and replace the fluid so he doesn’t become dehydrated and therefore unwell. We have had a few close calls where we have had to go to get him checked at the local but with a few tweaks we have managed to get home again.

We have had a few appointments this month and have a few things on next week, with a gastro jejunal tube change in Leeds on Friday and a fitting for his specialist boots on Tuesday, so he keeps us busy!

Though the surgery really has been amazing for Theo, unfortunately a lot of his issues remain and his pain is really quite bad at the moment. He continually surprises us with his immense bravery and acceptance. I want to again thank each and every one of you for your support and wonderful post… it really is amazing.

Update 3rd July 2013

I want to take this opportunity to thank each and every person who has sent post to my little man. You have no idea the difference it has made for him and brightened up the toughest day… there have been a few of those unfortunately.

Last time I updated we had been to Great Ormond street and they wanted Theo in for an urgent admission. Due to problems with beds etc we have finally got a date for next Monday (8th July). I can’t say I’m excited about it but it has to be done. Theo really needs some help to try and sort him out a bit so he is more comfortable.

We have had continued problems with his failing tube and have been backwards and forwards to hospital in a vain attempt to try and let them get it working. Unfortunately the flange of his tube is now embedded and the gastrostomy port has not been working for a couple of weeks. This has created issues for poor Theo but unfortunately all we can do is wait until next week for Great Ormond Street who will replace it. It is a bit of a mess now and rather infected so bring on the tube change. We have no idea what else they have planned for him so all we can do is wait for next Monday.

We have tried to make the best of family time until we go and have visited the seaside a few times. Theo has loved this but with his health deteriorating the traveling is increasingly difficult and he suffers badly in his car seat so we are limited in where we can go. His energy is lacking and he is struggling with pain. He is, however, typical gorgeous Theo, and does his best to enjoy what he can and tries his best to smile through it. We really hope this admission will bring some relief and we shall come home with a comfier little boy.

Post pals continues to be an absolute godsend for the family and especially Theo of course. It brings a lovely smile through some very tough times we have had and I want to thank everyone who has cared enough to send Theo some post. We treasure everything and all our cards and letters go in scrapbooks for Theo to look at when he wants to.

Update 9th May 2013

I firstly have to begin with a great big massive thank you to every single person who has cared enough to send Theo post and gifts. We really have been totally amazed by the kindness of strangers and these people are fast becoming friends. Theo is having a tough time so the smiles the post brings is so valuable.

The last time we updated we were waiting on an appointment with Theo’s consultant at Great Ormond Street. We went at the end of April and unfortunately the news isn’t good. The doctor was very unhappy with the state of Theo’s gut and the amount of distention he is getting. He also felt the level of Theo’s pain was unacceptable. The upshot of the appointment is that Theo requires a long term admission to Great Ormond Street to try to help him and his issues. Though this is gutting, as we are so far away when we are in there, it comes as a relief that they are going have him in and make a new plan of action.

While we are in Theo will have a new gastrojejunal tube placed as his isn’t in a good way and also have upper scopes and biopsies done and then the rest is in the hands of the doctors there.

So we wait… we wait for an admission date and a bed to be available and  while we wait we continue to plod on and try to keep Theo as well and comfortable as possible.

I shall aim to keep everyone updated on when we are going in and forward the address of the ward we will go into as I’m so hoping the happy post continues as I’m sure it will be a wonderful break for Theo in the long days in hospital.

Thank you again to everyone for the amazing post. Post Pals has been truly a god send so far for Theo, it has brought him some much needed smiles and therefore for us too… it is an amazing charity.

Story written 2013

Sophie is a happy go lucky, always smiling, little bundle of joy (most of the time!). She enjoys doing all things little girls love, especially her swimming and dance classes. Sophie started school last September and joined her brother Jack, who is 8, at his Primary School.

During May 2012 Sophie’s parents noticed a tremor in her left arm and, after numerous hospital visits and finally an MRI scan in June, the family received the terrible news, 2 months before Sophie’s 5th birthday that Sophie has a ‘supratentorial high grade glioma, bilateral thalamic tumour’. This is basically an aggressive brain tumour located in a very awkward part of the brain. The family has been told that the tumour is inoperable and the prognosis is very poor.

Sophie has remained brave in spite of everything and has always kept a smile on her face. She has already had two operations to relieve the pressure in her head and now has a shunt fitted. After searching the internet and looking for a cure Sophie’s parents decided to try a clinical trial. Sophie received a course of radiotherapy for 6 weeks and now receives the trial drug Avastin every other week and Chemotherapy every 28 days for a 5 day cycle. An MRI scan just before Christmas showed the tumour has reduced in size by 47% which is amazing progress.

Sophie continues to be an absolute star during all her treatment and travelling to Southampton. She amazes everyone with her strength, determination, calm acceptance and above all her endless energy. We do not know if it’s the standard chemotherapy, trial drug, the homeopathic, the supplements, the healing or the prayers that are keeping her going but we shall continue will all of them and will fight every step of the way.

Update 26th November 2013

At just after 8.30 last night our beautiful butterfly passed away. She was with her family who will always love her and treasure the time they had with her. She was strong until the end and made the world a better place. No wonder God wanted her.

Update 13th November 2013

Sophie had a special parcel arrive today from a Elf. The Elf left no name but we would like to say a massive thank you to the Elf as it was so thoughtful and kind to think of Sophie and to send early. Sophie sadly had a seizure today but she since has loved having some of the lovely White Snowman.

Sophie is deteriorating on a daily basis now and we are having to try and face the reality that our little angel is slipping from us. We have always known that the chance of us winning this battle was slim but we never gave up hope. We still have hope but now it is hope that she will not face any pain or suffering as she fades.

The seizures have returned and the recovery time from them is increasing with Sophie struggling to regain a normal breathing pattern. In between seizures she spends most of her time sleeping and it is a real struggle to talk. When she is awake she is aware of her surroundings and when she does utter a few words they are coherent and she makes sense. She is still our butterfly but we are aware that her time with us is nearly over.

She has given me so much over my time with her and I know that I am proud, and so very lucky that I was chosen to be her father. She has endured things that no child should ever have to and always with a smile… and normally a song!

She is loved by so many but none more so than Gemma, Jack and myself, and we hope that she knows this and knows that our love for her will always be there.

Update 3rd November 2013

We would like to say a massive thank you for everyones continued post that both Sophie and Jack receive. Big smiles from both of them for the chocolate they received this week from a lovely lady who did not send an address. We are sorry we have not replied to everyone but Sophie is now very poorly and time seems to be fly past each day. As Sophie’s body starts to fade her strength and determination is amazing. We draw comfort from that she is currently pain free and happy. Thank you all so much.

Update 19th October 2013

Thank you everyone for Sophie’s and Jack’s post. We cannot thank you enough. I am sorry we haven’t replied lately. Sophie has deteriorated over the last month physically and can no longer walk unaided and is suffering from seizures. It is heartbreaking to watch our little girl fade but she continues to smile so we do too. She is making us so proud and her strength and determination is beyond words. Thank you all so much.

Update 14th August 2013

After a couple of very long days in hospital we finally brought our beautiful butterfly back to the island. The doctors confirmed that she does have shingles and a possible line infection however both are being treated and shouldn’t take long to clear up.

Sophie braved her MRI yesterday with her usual confidence and never ending smile and today we received the results. In a nutshell, Sophie’s tumour has doubled in size since Christmas and it is working its way up into her brain and down onto the brainstem. It looks at this stage that there is nothing more we can try on the treatment front, however, I promise you all we have not given up looking. We are faced with the very real facts that Sophie may well have only a few short months at the most.

We know our little girl is a fighter and has shown us a strength that I would never have believed possible and whilst we are in her corner battling every minute of every day we are trying to come to terms with the truth that it is a battle we cannot hope to win.

We are focusing on her birthday next week and beyond that on a daily basis making sure she wakes each day with a smile and ends it in the same manner.

Update 3rd June 2013

We have been so busy the last week that we have not sent our last replies. One of which was a massive thank you to everyone at Post Pals for the massive parcel that arrived full of exciting things. Sophie and Jack were so happy and it arrived after a long day at hospital so was a lovely surprise. Thank you so much for all your continued support.

Sophie has a MRI scan on Monday 10^th June which happens to be 1 year to the day they scanned her on the Isle of Wight and rushed her by ambulance to Southampton. The day that changed our lives. But the doctors only gave Sophie 1-2 years, so she is doing amazingly well. The last scan 3 months ago showed the tumour to be a stable so we are praying that the results bring the same news.

Update 10th May 2013

Sophie is doing really well at moment. It is coming up to a year since she was diagnosed and with her consultants prognosis of only 1 to 2 years she is doing amazing and making us so proud. She continues on her Chemotherapy and trial drug Avastin and is due chemo all next week so we have our fingers crossed for a good week.

When not in hospital, Sophie is like any other 5 year old, she loves going to school and playing with her friends. Sophie really enjoys being outside and is looking forward to some nice weather so she can go to the beach.

We would like to thank everyone at Post Pals for being so kind to Sophie. She loves receiving post. Some lovely post arrives without return addresses and Sophie would like to say a big thank you to you all.

Update 1st April 2013

During March Sophie had an MRI scan to see how things were processing. We were pleased to be told the tumour is stable. The Consultant is very pleased with Sophie’s progress and the way she tolerates treatment. He cannot tell us how long the tumour will remain stable so we are making the most of every day. She will continue with her treatment of the trial drug Avastin in Southampton every other Monday and standard Chemo a week of every month. In between treatment Sophie is enjoying every day and even managing mornings at school.

Sophie now understands Post Pals and how fantastic it is. She looks forward to the Postman arriving and will try and read some of the post herself. Sophie and Jack have both had some lovely Easter gifts from some lovely people. Both have great fun writing and making things to return. The arrival of 2 of Dotties litter this month was also very exciting. It has been lovely to get some repeat post and getting to know some lovely people more.

Update 4th March 2013

We cannot thank everyone enough for all the kind letters, cards, notes and gifts that both Sophie and Jack have received in the first few weeks. Everyone has made them feel so welcome.

In April 2011 Charlie, aged just 10 months, was diagnosed with Acute Myeloid Leukaemia and within just 4 months he had already been through four intensive cycles of chemotherapy to try to beat the Leukaemia.

Despite the treatment Charlie relapsed and was desperately in need of a bone marrow transplant. Charlie had a BMT after cord blood match in America was found and he was doing well, but sadly the cancer returned in September 2012.

The doctors said Charlie could have a second transplant but in October they said there was nothing more that could be done. After lots of research a drug trial was found and Charlie started on it, the treatment didn’t work but he has been accepted onto a second trial.

Currently, Charlie is in HDU with pneumonia, he needs to improve to be able to have the new drug for his Leukaemia.

Charlie loves cars, he even drove the wedding rings down the aisle at his parents wedding and also loves Thomas the Tank Engine. He is also proud of his beads, each one is a procedure he has been through, they show what a brave boy he is.

Update 8th February 2013

We are sad to say Charlie passed away today.

Update 3rd February 2013

Charlie has a collection of fluid around his lungs, he had been given medication to try and remove the fluid but he continued to have breathing difficulties. He was moved to PICU last night and placed on a ventilator.

Story written 2012

Amelia is 4 years old. She started developing a noticeable wobbliness, her left hand was shaky, she kept falling over and her coordination deteriorated over a fairly long time. After several trips to the doctors and a blood test proved inconclusive we were referred to a paediatric consultant at our local hospital. She was seen on the 30th January and sent for an MRI scan the next day. We were told the news a few hours afterwards that she had a brain tumour, and discovered the next day that it was a fairly large brain stem tumour. A few days later we were transferred to the John Radcliffe Hospital in Oxford who have a dedicated neurology department at the Children’s Hospital.

A second MRI of her spine showed no tumour advancement to this area, and she was then operated on. The operation had two goals – one was to biopsy the tumour, which produced 4 tissue samples during the operation. The second was to try and remove any tumour other than the samples – which they were unable to do. After several days we were told that the samples showed a grade 2 Diffuse Astrocytoma, indicating that the core of the tumour was likely grade 3 or 4. We were then told that there was no chance of survival of a tumour of this type.

Chemotherapy and radiotherapy were offered, however we were told that a median increased survival of some 4 weeks was achieved after this treatment. We declined with the reason that we would rather spend quality time with our daughter than spend more weeks in hospital for such a dismal outcome. Amelia returned home unable to walk, she had speech problems, she was half paralysed and generally in a very bad state.

But she got better. Amelia showed us all how amazingly strong and brave kids can be, and after a few weeks we decided that we couldn’t sit and watch her die. The local community fundraised and sent Amelia to the Burzynski clinic in America. Treatment helped and the tumour became stable, and Amelia even managed to start school.

Sadly things did not remain stable and Amelia has deteriorated quickly. Today Amelia went to school for the last time, she was unable to speak as her speech has now gone, she is mostly paralysed, she can not sit up, she is loosing the ability to swallow and her breathing is getting worse. Tomorrow she will be transferred to a hospice.

Amelia has touched many people, both in her local community and around the world.

Update 6th January 2013

Amelia, our beautiful little girl, left us this morning at 9.50am, holding both our hands as she took one last breath. It was peaceful, quiet and without pain or suffering. Chantal and I had told her only minutes before that it was OK for her to go, to be free. Now she is.

Although there is a huge hole left in our lives, Chan and I will be strong and support each other through this awful time. Charlotte will have all our love as our daughter, and when she is older we can tell her about the amazing big sister she once had. Our hearts are shattered into a thousand pieces.

Thank you, everyone, for your love and support. Our lives will never be the same again.

Update evening of 5th January 2013

Amelia has slept almost the whole day. She has slept peacefully, only occasionally requesting a drink which we are able to get into her. She was awake for an hour or so at about 5pm which meant she could be with us at dinner time, and Chantal established she can eat cheese sauce and she ate lots of it. This is really good news as it avoids us having to put a feeding tube in.

Amelia is calm, so much calmer without the steroids. It appears they had passed the point of being effective so their removal hasn’t been drastic. The doctor believes we might now have a few days of stability and then a continued decline until the end. We don’t know how long but it might be another week. This is good news as it allows us time to talk to her and also be together as family without Amelia being in pain or discomfort.

Update 5th January 2013

We made the decision yesterday to not continue with Amelia’s steroid dose. This has two potential effects – one being that she will no longer be so hungry (she can no longer swallow anything really, just milk and little bits of chocolate) but also this will likely accelerate the effects of the tumour pressure inside her brain. Her quality of life is so poor that we made this horrible decision.

Amelia is now barely with us. We had more friends and family visiting yesterday, mostly for the last time. We are not sure if she will last the weekend but she has always been such a fighter and always amazes us. She is still the feisty, brave little girl inside, just trapped inside her body as it shuts down.

We know we don’t have long now, but the most precious time is being able to spend a few minutes each day whispering in her ear, telling her we love her, that we are proud of her, and that she is so incredibly brave. I know she is listening.

Update 3rd January 2013

We are settled in Naomi House, due to the deterioration Amelia is not expected to return home. We are exhausted but finally this evening we seem to have Amelia’s drugs at the right level. She has spent much of the day screaming with discomfort and frustration and there is only so much of that we can take.

Update 29th December 2012

Story written 2012

Tyanna was born 3 weeks early by emergency C/Section. She seemed well at birth with no apparent problems. Everything was fine until she was about 3 weeks old when she started to bring her milk back. We were told that it was reflux. She would then scream for hours each day with terrible colic and it was a difficult time for me as I was working nights and wouldn’t get any sleep.

When it came time to ween Tyanna, she couldn’t swallow the food and would gag and vomit it back out. The health visitor and GP were useless at the time and told us to persevere, which was so hard when she was losing weight.

When Tyanna was around the age of 5-6 months my own health started to deteriorate and I was taken into hospital where a huge tumour was found. I was transfered to The Royal Marsden in London where they diagnosed me with Neurofibromatosis 1. On researching it back home things fitted into place – problems that I had as a child and problems with Tyanna’s siblings. Through genetic counseling, Courtenay and Chelsea were diagnosed, and Cameron was inconclusive. At this time they decided that Tyanna was too young to diagnose, though in my heart I knew she had it. She had some of the characteristics of it, such as a larger head and cafe-au-lait birth marks. She was also not reaching mile stones such as rolling over or crawling.

I would take her back and forth to my Health Visitor but they just wouldn’t take on my concerns even though there was a family history and visual marks.

Finally, when Tyanna reached the age of 14 months and couldn’t sit unaided or bare any weight on her legs, and would only drink milk and not eat anything, they referred me to a pediatrician as an urgent case. Within weeks she saw the pediatrician and in less than 5 minutes Tyanna was diagnosed with NF1. I felt as if the weight of the world fell off my shoulders. She was then transferred to a developmental nursery 3 days a week. At this nursery she received help with speech and language, physiotherapy, play therapy, help with feeding and occupational therapy.

The nursery was a lifeline and Tyanna came on leaps and bounds. At the time she was also diagnosed as quite badly anemic (believe it or not too much milk can cause this). As milk was all she would take we’d give her loads thinking we were helping her. We were also told that she had pica and not that you’d ever believe it, but now selective mutism. The biggest thing apart from NF was developmental delay.

Tyanna loved it at this nursery and even went on 2 holidays to Disney Land Paris with other children with special needs. We were going stir crazy after she made us go on the small world ride 12 times on the trot – even now i can’t get that song out of my head!

Tyanna did well from the physio and managed to sit unaided at around 18 months, but baring weight on her legs was still a problem so she had to wear canvas braces called gaiters for a few hours a day. This would stop her legs from bending and strengthen them up. It was one of the proudest moments of our lives when she walked 2 months after her 2nd birthday and after that there was no stopping her.

Tyanna started to school with a 1-1 school support worker, she was still in nappies full time and way behind the other children. She thrived in school and stopped wearing nappies in the day at 4 and half and in the night at 5 and a half.

Tyanna is now 9 but still around 2 years or so behind her peers, she no longer has one to one support and is in main stream school. She is such a funny little girl who says she’s a dude. She is also so sociable and a lot of you may have met her when she attended the Post Pals parties with her sister Courtenay P.

Lately though, Tyanna has been going through a really tough time, she has tumours growing under her ribs that cause her a lot of pain. She is also suffering form horrific migraines where she has occasionally been hitting out at her head as they’ve been so bad. She also has to sleep with her head under the pillow as she can’t even bare the slightest light. I took her to see Santa a few days ago and instead of toys she asked him to make her headaches go – if only it was that easy.

The pain Tyanna has been in seems to be changing her personality, she seems to be changing before our eyes and becoming aggressive and hitting other children. This is nothing like Tyanna – she’s usually so lovable, funny and caring.

Tyanna is due to go to London to see a NF specialist on December 13th and hopefully then we can get some answers and get her scanned. The clinic is in Guy’s which is a 9 hour round trip for us. I also go to this clinic but see a different doctor and it’s really good there. It’s one of the top NF clinics in the country so I will know she’s in good hands.

Update 1st May 2016

I would like to thank everybody who has taken the time to write to the children over the years it really does make a difference and has helped bring many smiles.

Update 22nd September 2015

Tyanna has been a busy girl. On her last update I said she was going to see One Direction in Cardiff… She went on both nights and cried on both occasions! She is very disappointed that they are taking a break from singing for a few months. She bought the tour t-shirt and wears it all the time.

In Bulgaria she stayed in the pool constantly, from the time she got up until the time we went out. She did some karaoke, all One Direction tracks of course and she sings really well. I think she’s following her sister, Courtenay.

She looked very grown up on her first day back to school and she enjoys school.

The tumours on her ribs have stabilised although they are still painful.

Thank you to everyone who sends cards, letters and gifts.

Update 13th May 2015

Tyanna is doing really well in school and is on both an I.E.P and I.B.P. Sharon has to go to the school tomorrow to do an assessment with Tyanna’s head of year.

Tyanna has a busy time in in June as it’s her birthday, the Post Pals party, and then she’s going to see One Direction at the millennium stadium in Cardiff twice. Sharon and I bought Tyanna a set of tickets for Christmas and then a couple of months later she won another set for the Friday night. Tyanna is One Direction mad, she collects everything from sweet wrappers to pieces of paper with the name One Direcrion on it.

Tyanna went to the hospital in London and her tumors have stabilised which is good news.

We are going to Bulgaria in July and we are looking forward to it. Then in October the kids are going to a neurofibromatosis camp at Marchants Hill PGL camp. The children will have the opportunity to mix and do activities with kids with the same condition.

Thank you to everyone for the children’s post.

Update 2nd August 2014

Tyanna’s tumours haven’t caused any more trouble (apart from the pain she has as they’re on the nerves so it really hurts if she’s accidentally knocked). She’s also sleeping a little better, but as with a lot of children with ADHD, she still has sleepless nights. We’ve also been told she’s on the autistic spectrum but we need the final appointment with the specialist before it can be made official. She has a lot of the characteristics and obsessions – her latest one is One Direction. Understandably, a lot of kids love 1D, but it’s not a normal kind of fan obsession, it’s the hours of researching and taking about them etc. I’m yet to take her to a concert as when they were in London last time I was a little afraid to travel alone and the train costs, hotel cost, ticket prices, were too expensive. I’m definitely taking her next tour though.

This school year was the last year in primary for Tyanna and she was devastated to hear that she won’t be in the same classes as her friends that she’s been all the way through school with. She’s being placed in the special needs department. She broke her heart over this because her best friend always stood up for Tyanna when she was bullied and had her back. She hates change as it is, but going to a totally new school is scary enough, but without people she doesn’t know it is even worse. Everyone apart from one boy will be strangers. On the good side, there’s only 12 people in the class with a teacher and 2-3 assistants, so she’ll be getting extra help.

It’s been a tough year as she’s been stopped from doing everything she loved due to her NF, such as rugby and boxing and she doesn’t understand why. Sports such as ballet and dance would never appeal to her as she’s a tomboy at heart.

She had a lovely time on holidays and made a friend within 5 minutes of being in the pool who she spent the whole holiday with.

Thank you to everyone who has posted to Tyanna, it really means a lot. All the children love their post, but Tyanna the most. She always runs to the door when she hears the postman.

Update 10th March 2014

Firstly, I’d like to thank everyone for sending cards, letters and parcels, to Tyanna, Cameron and also Courtenay.

Tyanna is growing up fast. She’s coming along brilliantly in school although she’s still on her IEP. Her teacher is a SENCO so that helps. Tyanna doesn’t like teaching assistants.

Tyanna has to attend the hospital in london on Thursday just for a check up. We will tell you of any news regarding the hospital in due time.

In April, Tyanna, and Courtenay are attending a week long PGL camp with me as one of the helpers. There’s a lot to organise and we are all looking forward to it. We will be abseiling etc.

We hope everyone is ok and keep smiling.

Update 20th November 2013

Tyanna had her results today. On the good side, the brain ones were normal, thank goodness. The tumours under her ribs have grown a little but are of no major concern apart from the horrible pain she has as they’re not interfering with any organs. What I didn’t know about was that there are clusters of tumours going down her back that explains the back pain she’d complained about. They’re not interfering with any major nerves, only minor ones, which is good news.

On the really upsetting side though they told me last week that she isn’t allowed to play rugby anymore which really upset her as she’s restricted enough already and it was something she really took to. The team has been good though and given her the job of being the raffle ticket seller on home games.

Also, thank you to everyone who has written and posted cards etc. As soon as Tyanna comes in from school she runs to the desk to see if she has a letter.

Update 15th August 2013

Tyanna has had a difficult few months. Her headaches and migraines are still there and slowly becoming worse. Her mood swings are also becoming worse. Her behaviour has declined badly in school and we think there is a pattern to it. It seems to become a lot worse the day after a particularly bad migraine or headache. She’s complaining more about back pain and pain from the tumours under her ribs.

We have had a hell of a lot of trouble trying to get her scans that her doctor in London marked down as urgent. They were turned down for funding by the trust in London because she’s Welsh and turned down for funding by the Welsh trust because of the scans having to be in London. We felt that we were banging our heads against a brick wall and had nowhere to turn to. It wasn’t Tyanna’s fault that she goes to London in the first place because there isn’t a NF specialist in Wales that she could see. I insisted on an appeal which at first was turned down. I looked into going private but was told that they don’t deal with private patients of Tyanna’s age. That made me want to scream in frustration. My next step was going to go to my MP and the press and media due to my disgust of her treatment. Just before this I had appealed again and last week to my delight I found out that it was successful and the funding was there for Tyanna. It’s a massive weight off my shoulders, we just have to wait for a date.

She recently had an appointment with her paediatrician here in Wales. The paediatrician noticed that the tumours under Tyanna’s ribs looked bigger. She also thinks that Tyanna may be on the autistic spectrum along with her Global Developmental Delay and ADHD. We just have to wait for appointments with the specialists on these fields.

Tyanna had a lovely time at the Post Pals party and made some lovely new friends and was so pleased to see her old ones, especially Dan G.

Tyanna also loved the holiday in Clacton and behaved beautifully the whole time. She also learned a new trick that made me want to die of embarrassment! She found out that if she cried by the grabbing machines in the arcades people took pity on her and gave her the toys that they had won. I didn’t leave her out of my sight after that one! She was also thrilled to meet Peter Andre’s brother and asked him to tell Peter that she loved him!

A massive thank you to everyone that have sent post to the children. It brightens their day and we really appreciate it.

Update 9th May 2013

Tyanna has had a few problems since her last update. She has had a couple of hospital appointments in London. Due to a large area on her back covered by a cafe-au-lait, it was recommended by her paeditrician that there was the possibility of scoliosis but this was out ruled by an MRI scan. We have been told there is a small tumour there but at the moment it isn’t causing any problems, and needs to be kept an eye on. She needs another scan under GA at a later date.

For the last couple of months, due to Dr Ross Ferna’s instructions, has been put on tablets to help her sleep because of her hyperactivity. We are waiting at present for an educational psychologist to attend her school, because it is under the belief by her doctor in London that Tyanna has ADHD and this is associated with her condition NF1. Tyanna has also been prescribed migraine medication when needed. Due to the migraine headaches Tyanna gets very frustrated and irritable, and at times has tantrums which we are trying to manage, my wife better than me. Sometimes I have to pick her up from school.

Tyanna has been praised by her teachers recently because of her brilliant imagination at story telling and we have had brilliant news on her IEP (individual Education Plan) where her reading, writing and mathematics are concerned.

I’d like to thank everyone for your kindness with the gifts and cards that you send Tyanna, it is very kind of you.

Story written 2012

Megan has severe uncontrolled epilepsy (she does not go more than 4 minutes without some sort of seizure activity), congenital hydrocephalus (shunt in situ), severe brain damage to the left side and partial to the right, cerebral palsy mainly to the left side, VSD, T.O.F., visual impairment, sensory processing disorder, and global development delay.

Meggie was diagnosed with hydrocephalus before birth. The chances of her surviving birth was less than 20% and we were told that should she survive her prognosis was very poor, that she would never be able to walk or talk, she would be blind and severely mentally impaired. Meggie was born at 33 weeks weighing 4lb, although the fluid in her head took a third of this! She had a cone shaped head and from day one was stared at by other parents / grandparents in N.I.C.U. At 24 hours old she was blue lighted to Great Ormond Street Hospital as it was discovered she needed urgent surgery to repair  tracheostomy fistula and again we were warned that she probably would not survive the journey, let alone the operation! However they didn’t reckon on Meggie’s strength, she not only survived that operation but also the operation a couple of days later to put a shunt into her head.

After a couple of weeks Meggie was transferred back to her local hospital, but unfortunately her condition kept worsening and several times she had to be resuscitated. At one point even a DNR was signed because it was felt her little body had had enough! But Meggie thought otherwise and, thanks to a doctor trying a new baby milk with added meds, Meggie turned a corner!

Over the next months she was regularly seen by different Doctors at GOSH as she is visually impaired, has a heart defect, spine defect, feeding problems. It was on the way home from one of these appointments that Meggie had her first seizure, quickly followed by several more. She was 8 months old! She was later diagnosed with cerebral palsy.

Meggie learnt to sit on her own at the age of 22 months. At the age of 4 she learnt to walk with a walking frame and at the age of 5 she took her first steps on her own!

She has always loved to sing and dance… first shuffling on her bottom and later holding onto the television! She even taught a ‘non verbal’ friend in school how to sign / sing JLS’ song ‘Everybody in Love’ and regularly entertains the staff and pupils at the special needs school she attends!

Meggie is 10 years old now. She totally loves JLS and says she is going to marry Aston! Unfortunately because her seizures are so bad we cannot take her to see JLS in concert or even to a book signing. She has so many seizures everyday and a recent telemetry study showed that the longest she goes without a seizure of some kind is 4 minutes. She has already ‘statused’ twice and we know we are on borrowed time as there is little that can be done as surgery would not work as she has so many ‘pockets’ of brain damage from the hydrocephalus etc.

Meggie is a very sociable little girl and loves chatting to people… even if she does ask exactly the same questions every time! Meggie loves playing ‘Doctors’, it is the only game she can really play (although she used to enjoy playing on her brothers DS), as she is only really age 2/3 years mentally.

Every one that meets Meggie never forgets her though, she is such a character and loved by so many! I think Meggie would be so happy to have ‘post pals’ as she loves people! But also for her family, mainly her 2 brothers, who miss so much of ‘normal life’ because of Meggie… yet they have never, ever complained. Last Saturday they were all ready to leave the house to go to town to watch Santa arrive and the Christmas lights switched on, but Meggie had a seizure in the doorway lasting 33 minutes. They just quietly took their coats off and got her bean bag for her to be comfortable in and sat with her.

Update 24th August 2016

Meggie is having a very ‘up and down’ time at the moment. She is not coping very well with school holidays and lots of family birthdays, so she has been having a lot more seizures every day! Because of this the family are having to have a very quiet holidays and are unable to go anywhere. This of course has been a bit unfair to Liam and Scarlett, but being the fantastic children that they are they have said they would rather stay at home and play with Meggie than to go on trips without her!
Meggie is still only age 2 – 4 yrs mentally and only plays ‘doctors’ or ‘vets’ with every doll and animal she has! She still loves monkeys, although she loves any cuddly toy! She loves listening to music … any music, and has the ability to learn and remember a song she has heard just once yet she cannot remember a person she met the day before or what she did! 3 years ago she was lucky enough to win a ‘meet and greet’ with her idols JLS, unfortunately the following day she had a huge seizure that wiped out her memory of meeting them. Then 2 days ago, after a particularly nasty and long seizure, she suddenly started telling everyone she meets that ‘she met JLS yesterday’!
Meggie loves receiving post from her Post Pals and sends her love to you all!
Liam is still a very loving, caring brother to Meggie and is about to start secondary school.

Scarlett is now 6yrs old and although she is very petite with blonde hair she is a Tomboy through and through! Like her brother loves Star Wars, Pocomon, lego and collecting Trump cards.
Like Meggie both Liam and Scarlett all love ‘making’ things and cooking together. Although Meggie is not very good at it, they both help her and let her think she has done it all herself!
They all love receiving their post and send a big ‘thank you’ to everyone!

Update 28th January 2016

Meggie has had a very up and down year with some very nasty, life-threatening seizures where we have thought we would lose her! She still has several ‘drop’ seizures every day, as well as her usual ones, but is always happy and smiling. Her mobility has worsened and she relies on her wheelchair a lot more. Although she is almost 14 yrs old, she still only has the mental age of 2 -3 yrs. She cannot write any more as she lost a lot of her skills and memory after some very bad seizures. But she does like to ‘draw’ pictures and colour (although it is more a patch of colour over a picture) and she enjoys it. She only plays ‘doctors’ and she loves snuggly cuddly toys, especially monkeys, she collects them! Meggie does not eat any sweets, only chocolate. Meggie loves all the cards, letters and parcels she receives from Post Pals and loves it when we read them to her. Thank you.

Marley is now 16 yrs old and, whilst he has had some lovely gifts over the past couple of years and is very grateful, we feel he should be removed from Post Pals.

Update 10th December 2014

We’re having a hard time right now, but I just wanted to say a big thank you to everyone for the post… it has made a huge difference to my babies. I’d also like to say a special thank you to a lovely lady called Regina and her niece… the Angel that arrived today was perfect and I needed her today. Thank you so much, she’s hanging in our room.

Update 13th October 2014

Hi everyone, the weather has caused chaos in my house and my two lung babies have been ill. Meggie has been up and down with seizures and sensory issues (never a good time of year for her) and my other children have also needed extra mum time. I’ve been ill too on top of it all. However, we have had some lovely post and it has really brightened things for my babies. So, a big, huge thank you to you all. Meggy has even taken part in a road safety exercise at school using her light up umbrella that Post Pals sent her! Thank you again everyone.

Update 1st June 2014

Meggie was admitted to hospital after she statused a couple of weeks ago. She was resuscitated but it has left her unable to walk now and barely able to move. She has lost a lot of her memory and is now ‘into’ Noddy, Dr Ranj and CBeebies… she sadly barely remembers JLS.

We are now living on a ‘one day at a time’ with Megs and also dealing with her older sister who has been diagnosed with a lifelong disability and is unfortunately unable to attend school and do her GCSE’s anymore. As a family we are truly suffering at the moment.

Update 22nd November 2013

My children, Meggie D, Scarlett, Liam and Marley, have had some lovely post from some special Post Pals. We are going through some things at the moment and I haven’t had time to personally thank you all, but you really have cheered my children up, so thank you.

Update 28th September 2013

Meggie is in hospital at the moment as she had a 38 hour ‘status seizure’. It was a bit touch and go but she is on the mend thank goodness! We are waiting for the results of CT scan / X-rays / shunt revision to see whether she will be transferred to GOSH or just her meds reviewed.

Thank you for everything sent to Meggie and her brothers and sisters, they make such a difference!

Update 30th March 2013

We had some news regarding Meggie’s health a couple of weeks ago from her GOSH neurologist that was quite upsetting. Her health is deteriorating and her seizures are worsening (she has had 6 in 2 hours this morning already). She is also losing a lot of skills she had developed, which is upsetting for her as well as us.

However, the next day she was sent a beautiful JLS necklace from a Post Pal! Thank you for the post sent to Meggie and her siblings, she has had some lovely mail which has always seemed to arrive when she’s having a particularly bad day.

Story written 2012

Lydia was diagnosed with Gorlin Syndrome when she was born. Lyd’s was poorly when she was little and had meningitis when she was just 7 weeks old and complications. She has spent her childhood in and out of hospital but has always been brave and our plan was to give her an amazing childhood to remember during the hospital stays she would have as an adult (which are almost guaranteed due to Gorlin Syndrome). However, Lydia got diagnosed with a Meduloblastoma (a cancerous brain tumor) this summer and is currently undergoing chemotherapy which is making her very poorly. Although we always knew she would be an ill grown up it has felt very unfair that she hasn’t had much time to be a child. The days where she is very sick or in pain are hard, but she plays on, cheering up all of the adults around her with her wonderful imagination and silly games. The tests she has to have are numerous and it is hard to explain how something that hurts can be good for you, but Lydia is patient and trusting and the little things seem to help her remember that life isn’t all tests and feeling ill! She has lots of trouble with her tummy, seems to get neutropenic very quickly (thank you to all the blood donors out there) and is obviously very sick from chemo. She can’t have radio therapy because of her Gorlins, so the chemo has a bigger job to do and is at a higher doses to help it do it.

Thank you so much for reading this and for thinking of Lydia. Lydia and I have sent post to other Pals since Lydia was little and it’s a great comfort to know that there are people out there who care enough to brighten their day, and now Lydia’s too, as she is more poorly than we ever imagined. Thank you so much to the Post Pals team too, you do an amazing job!

Update 29th May 2014

We are very sad to say Lydia passed away peacefully at home, with her Mum and Dad at her side, following her battle with a brain tumour.

Update 21st June 2013

With so many Children on Post Pals I think that now is a good time for Lydia to ‘move on’. She has had such fantastic post over the last 7/8 months and although we still have some hurdles and recovery to get through, I think it would be better that other children benefit from the lovely letters and post that gets sent. Lydia really enjoyed getting so many letters and presents and we will continue to send post, just as we did before Lydia got sick.

Thanks so much to everybody.

Update 10th May 2013

Lydia is home!!! Thank you so so much to everyone who has sent Lydia post this month. We are pleased to say that after 10 long weeks of isolation Lydia is back home We originally only had two days at home then back in with an infection, but have now been home for two weeks and Lydia is even managing to go to school for short spells. We won’t find out how successful this high dose has been until mid June when lydia has her MRIs, so for now we are hoping for the best and enjoying all being together as a family at home. Lydia’s blood levels are still very unpredictable but that should start to steady itself soon.

Thanks again for all the wonderful support Lydia had throughout the isolation period and I am slowly starting to work my way through the massive pile of thank you we need to write!

Update 20th April 2013

We are so pleased that Lydia is home, it has been a very long and tough (nearly) 10 weeks and Lydia has been mega brave the whole way through. There is still a way to go in recovery and home brings its own new challenges, but we are heading in the right direction!

Thanks to everyone who sends post.

Update 13th April 2013

Lydia is home for 24 hours! We will be back on the ward again tomorrow evening but she is still very excited to be allowed home.

Thanks again for all the lovely post, it has made a big difference. This high dose chemo and stem cell transplant was much harder than we expected but we are very proud of Lyds and the finish line is in sight!!

Update 24th February 2013

Lyds has gone down hill fairly rapidly over the last 48hrs and was only awake for about 2 hours today and even then most of that time she spent throwing up. She hasn’t managed to eat for 4 days now so they are starting TPN feeds tomorrow. She hasn’t opened post for a couple of days but is looking forward to doing it soon.

Update 5th February 2013

Lydia has now had enough stem cells harvested to move onto high dose chemotherapy, she will then have her stem cells returned to her (the same as a bone marrow transplant but the cells are Lydia’s own. This is often the hardest part of cancer treatment and Lydia will be in hospital for quite a while.

Update 9th January 2013

We’re HOME! The whole family is excited that cycle 5 is now finished and we are home. Lydia spent Christmas and New year on the ward and although the staff did an amazing job to make it special it still lacked that christmasy feeling, although Lydia made the best out of it. Unfortunately, the doctors weren’t able to harvest Lydia’s stem cells last month as there simply weren’t enough mobile ones despite all the hospitals efforts to shift them. She still however needs to have a stem cell transplant and high dose chemo as soon as possible so they have acquired some extra drug from GOSH that they haven’t used on Piam Brown before, but are hopeful it will help get some stem cells for harvest. The plan is to go in for harvest on the 26th January and start high dose the following week. This Friday (11th) Lydia has her first MRI since she started treatment which the whole family are nervous about, but after that we should have about two weeks to cram in some fun (and probably some school) before we start the next phase. Thank you, thank you, THANK YOU for all the amazing post Lydia has received, we are truly overwhelmed. I’m sorry I haven’t written many thank you letters but Lydia is really grateful and it lights up her face when her post arrives.