Story Written 2026

Story Written 2026

Nathan has Duchenne Muscular Dystrophy, it affects him with his mobility so he can’t do things like other children his age, he gets very frustrated and he feels alone sometimes.

Story Written 2026

Beth has congenital heart problems now with heart failure, has undergone 6 open heart surgeries since 10 days old and is now waiting for a heart transplant.

Update 13th April 2026

Beth has decided to come home from hospital. She is going to wait for her heart transplant at home under palliative care.

Story Written 2026

Initially diagnosed in 2023 Faye completed treatment in 2024 before relapsing in 2025. Faye deals with side effects of chemotherapy, radiotherapy (proton beam) and multiple surgeries including failed resection. This include mobility issues (Faye uses a wheelchair), fatigue, being immunocompromised, sickness, bowel issues, growth issues to make a few. She has been unable to attend school since relapse. Some days, especially during treatment weeks, are particularly hard for Faye with one chemo drug in particular causing low moods along with standard side effects.

Update 16th September 2026

I’m so sorry we haven’t updated Faye and Connie’s profile for a while. In truth we’ve had a really tricky few months with lots of changes to treatment for Faye and lots of travel to far away hospitals for trial treatments. She’s had more time in as an inpatient than planned but luckily managed a couple of lovely holidays over the summer, including being away for her 9th birthday last week.

She is in hospital at the moment and our friend delivered in all her birthday post and it was such a pick-me-up for her! She set about straight away to playing with everything

I’d just like to reach out and say a huge thank you to Post Pals for all the letters and gifts that have arrived over the last months. Faye and Connie have loved opening everything – it really does put a smile on their faces. An especially big thank you for all the birthday cards and gifts Faye received this month. People are so kind.

Faye continues to love her birds and wildlife – in particular she’s become a pigeon fanatic and I’m sure our local park pigeons know her by sight now. She loves being creative and has recently discovered the joys of Minecraft world building – she now plans on recording a couple of YouTuber style videos to share her world. So many people have written to Faye and Connie about their animals and they are very excited to share with you that at the end of the month we have a new furry friend joining us – Cora, a two year old dog we’re rescuing from Romania.

Connie has just started in year 1 and, like her big sister, is showing a love of learning and a talent for Maths. She is very keen to start learning about History too. Connie loves riding her bike and swimming. She’s always busy and has a wonderful imagination – she’s currently playing bring mummy to her three baby dolls!

Thank you so much for all your support,

Story Written 2026

After 2 failed doctor appointments I took Dulcie to A&E where a scan showed a tumour (head). We were blue lighted to Southampton where 2 days later Dulcie had a 10 hour op to remove a tumour. This was successful but a small part had to be left because it was on top of her spine. Dulcie managed to avoid PICU and was up 2 days later, we then went home awaiting a call from Southampton. 2 weeks later we had a meeting at Piam Brown ward, we were then informed the diagnosis was b-lymphoblastic lymphoma, she has undergone long intensive chemo with a number of hospital stays. Scans show she is getting there slowly and her treatment is due to finish June 2027.

Update 16th July 2026

Dulcie is doing OK. We have had to have a few weeks off chemo because she’s had a nasty cold, but we’re now back on track.

We have had so many people writing to us. The older two, Billy and Norah, love reading all the letters, and they are all treasured in a special box. They sort through them and read them to Dulcie.

We have had some items that didn’t say who they were from. We do like to thank people and have returned cards when we can. A few names we have had are Anna and Beverly, and we’ve also received letters from France.

We have received some amazing presents from our new Post Pals buddies, and today we received the most beautiful parcel. The letter had me in tears, it was from STk. I would really like to thank them personally.

Story Written in 2013

Hugo had a tummy ache for a couple of weeks, we got it checked out by the GP when it first started and we were told it was a viral infection. Two weeks later he was still complaining on and off of tummy ache so we took him back to the GP where we were told his liver felt enlarged and they wanted us to go straight to our local hospital. They did lots of tests and scans which discovered he had a few lumps in his liver. We were then referred to Great Ormond Street, they did a biopsy and discovered it was in fact hepatoblastoma. He started chemo a few days later. He is currently on the list for a liver transplant.

Update 2nd May 2023

After waiting for a liver transplant, Hugo got his call this morning and is currently in theatre having his liver transplant.

Story Written 2023

We found out prenatally that Connie has an extremely rare condition that her late sister had called Mitchel Riley syndrome, at birth she also suffered a huge brain injury resulting in HIE. Connie is TPN dependent due to intestinal failure, type 1 diabetic and has liver disease. Due to the HIE Connie has quadriplegic cerebral palsy, dystonia and severe visual impairment.

Update 9th of July 2026

Thank you to the kids monthly senders

Story Written 2023

Kaston was diagnosed with acute lymphoblastic leukaemia on 23rd July 2020. He’s had 8 months of intensive chemotherapy treatment, lots of hospital admissions, blood transfusions, platelet transfusions, blood tests, bone marrow aspirations and lumbar punctures. In March2021 Kaston started maintenance treatment, daily chemotherapy, weekly blood tests, 4 weekly IV vincristine chemotherapy. Monthly steroids for five days, weekend medication to prevent infections. He went back to school in March 2021.

Story written 2024

Maya unfortunately relapsed with Neuroblastoma after being stable for 4 years and 10 months. It has now spread to her skull, spine, pelvis, thigh bones and arms.

Update 31st August 2026

Maya worked hard in neuro-rehab but had to leave early due to severe pain. Scans have shown new Neuroblastoma areas. The Neuroblastoma is currently in her skull, chest, ribs, liver, spine, right upper arm and both thigh bones,

Update 2nd June 2026

Since Maya was discharged home on 30th March after five months at GOSH, life has become a constant battle to secure the equipment, services and adaptations she needs simply to live safely and with dignity.

Our days have been consumed by appointments, assessments, phone calls, emails and endless advocacy.

Since coming home:

Maya finally received her wheelchair after three weeks. We have had a couple of home adaptation assessments. Hoist installation failed due to contractor errors. We are still waiting for a suitable WAV (Wheelchair Accessible Vehicle). Maya still sleeps in our living room. She still has no adapted bedroom. She still has no suitable bathing facilities. These are not luxuries. They are basic needs for a disabled child.

Despite surviving severe complications following CAR-T therapy, despite months in hospital and despite everything cancer has already taken, Maya continues to face Neuroblastoma.

On 7th May, she underwent radiotherapy at The Royal Marsden.

Sometimes we wonder how much one child can possibly endure. On 1st June, Maya begins intensive neuro-rehabilitation at The Children’s Trust in Tadworth.

She desperately wanted to remain at home, so we will travel approximately 130 miles every day, five days a week, for 12 weeks.

Update 1st of May 2026

Maya has a new area of active Neuroblastoma. When it was first found it was 7mm and on the most recent scan it was 12mm. It’s between T9-T10 on her spine. Chemotherapy isn’t an option but they are discussing options.

Update 31st of March 2026

Today Maya went home after 5 long months in Great Ormond Street Hospital. The good news is her Neuroblastoma is currently stable and doesn’t require treatment but she has suffered a lot of damage from the CAR-T cell therapy. She is still herself though and is waiting for a bed at a brain injury rehab place. Until the bed becomes available Maya and her family will be enjoying some family time at home. Thank you to everyone who sends Maya and Lola post.

Update 15th November 2025

Our beautiful Maya has reached one of the most difficult parts of her CAR-T cell therapy journey. Over the last week or so, she developed severe ICANS (Immune effector Cell–Associated Neurotoxicity Syndrome), a complication where the brain becomes inflamed from the powerful immune treatment that is fighting her cancer #neuroblastoma.

Because of this inflammation, Maya has been experiencing:

•confusion

•struggling to speak

•tremors

•agitation

•seizure-like jerky movements

•and very long periods of reduced level of consciousness

Watching Maya like this has been the most painful thing we’ve ever gone through as parents. Our little girl, who was laughing, talking and singing only a little over a week ago, is now fighting silently through something no child should ever face.

When Maya was in ICU, she was surrounded by machines and wires, receiving:

•maximum-dose steroids (Dexamethasone initially, now changed to MethylPrednisolone)

•continuous Anakinra

•Tocilizumab (several doses given) and •Siltuximab (one-off)

•Rituximab (one-off to “switch-off” the Car T cells

•antiviral and antifungal protection

•IV fluids and potassium

•seizure prevention (Keppra or Levetiracetam)

•round-the-clock monitoring

Maya is on the highest level of care, with every treatment available to calm the inflammation in her brain and stabilise her body.

And although this stage is terrifying, we are holding onto the hope that Maya will recover from severe ICANS.

She will eventually wake up slowly.

She will start responding.

She will begin to speak again.

She will regain movement and strength.

We had been warned that recovery is NOT instant — it often takes several weeks, sometimes months — but her medical team is doing everything possible to bring her back to us, step by step.

We cling to HOPE every second.

Update 12th November 2025

On Sunday, 10th November the first signs of neurotoxicity appeared — hallucinations, confusion, and Maya “talking” to her best friends and pets.

Terry and I were breaking inside as we watched Maya “drifting away,” her eyes rolling upwards, her body jerking as though seizing.

Terry stayed at a nearby family accommodation (a 5-minute walk from the hospital), while I stayed with Maya overnight. We agreed to take turns — one watching over her, the other trying to get a few hours of sleep. But that night, Maya’s eyes kept rolling upwards, and even when the hospital fire alarm went off, she didn’t react at all. Normally, she’d be curious and asking questions. This time, nothing.

At around 2am, as her steroid (Dexamethasone) infusion was finishing, her heart rate suddenly spiked to 172 beats per minute — and everything spiralled. I had to pull the emergency crash call button on Lion Ward — one of the most terrifying things a parent can do.

By 3am on Monday 11th November, Maya’s care had been taken over by the ICU team due to severe, uncontained side effects of her CAR-T Cell Therapy — known medically as Cytokine Release Syndrome (CRS), sometimes called “cytokine storms.”

Since then, Maya has been mostly unresponsive, with jerky movements, and she’s now in acute heart failure due to fluid buildup around her chest. The doctors are hopeful this could be reversible. Her echocardiogram on Tuesday showed her heart’s ejection fraction at only 20%, improving slightly to 30% today — a small but meaningful sign of hope.

Maya is currently being monitored around the clock by Oncology, Cardiology, Neurology, and ICU teams. She’s receiving continuous Optiflow (45L/min, 25% oxygen), high-dose Dexamethasone (steroids), Tocilizumab, Anakinra, Siltuximab (a one-off dose), Milrinone (for heart failure), IV fluids with potassium (adjusted every six hours), Aciclovir, Allopurinol, and Levothyroxine, alongside supportive medications like Paracetamol, Chlorphenamine, Clonidine, Melatonin, and Ketamine when needed.

Despite all these intensive measures, today (Tuesday, 12th November) there hasn’t been further improvement. After long discussions with her doctors, Terry and I have made the difficult decision — one no parent ever imagines making — we agreed to the doctors’ decision to switch off the active CAR-T cells using Rituximab, an antibody “safety switch” designed to destroy them.

The hope is that a small number of CAR-T cells will survive — enough to keep fighting the neuroblastoma cells, but without causing further damage to Maya’s heart and brain.

Watching Maya like this is soul-destroying.  But I’m clinging to every flicker of hope, staying positive, and trusting her team.

None of this was predictable.

CAR-T Cell Therapy was our only remaining option against neuroblastoma — a leap of faith we had to take. For now, we’re not worrying about the cancer; we’ll know more in early December when she has her bone marrow biopsy, MIBG, and MRI scans.

Right now, the focus is on saving her brain, her heart, and her spirit — bringing back our feisty, stubborn, happy Maya who sings her karaoke songs with all her heart.

Update 3rd November 2025

Despite being on constant treatment Maya relapses again. She is currently in hospital having CAR-T cell therapy. She has been struggling a lot with pain.

Maya is now 12 years old and has a heart full of sparkle and joy. She loves karaoke nights and singing her favourite songs at the top of her voice — music is her happy place. When she’s not singing, she’s pampering herself with a manicure, pedicure, or a relaxing reflexology or full-body massage — because feeling good matters just as much as having fun!

Fashion and beauty light her up — she adores make-up, spritzing her favourite perfumes, and browsing through the aisles of TK Maxx and Primark for cute clothes and treasures. For a perfect day out, Maya loves a round of crazy golf, a game of bowling, or a pamper day at the spa followed by a cosy stay in a hotel — with the best bit being breakfast the next morning!

She’s also a Lego lover and could spend hours building and imagining adventures — especially when visiting Legoland or Chessington, two of her favourite places. Maya loves animals too and enjoys trips to the zoo, where she lights up seeing the lions, monkeys, and penguins.

Her eyes truly sparkle during the festive season — she adores Christmas lights, Lapland visits, and all the magic that comes with them. And when it’s time to eat out, Maya’s favourites are Wagamama, Pizza Express, Nando’s, and any cosy noodle spot that makes her smile.

Maya is a girl who finds joy in life’s little luxuries, laughter in every moment, and magic everywhere she goes.

Being a sibling is tough on Lola too, music keeps her going. Lola’s world seems to hum with music. When she’s not strumming her guitar or figuring out a new tune on the piano, she’s singing her heart out at Open Mics or turning karaoke nights into mini concerts. Her love for music runs deep — it’s what makes her eyes light up when she talks about her Diploma for Music at college. But Lola isn’t all rehearsals and practice rooms; she’s got a flair for style too. She loves clothes shopping, wearing her favourite designer perfume, and treating herself to spa days and nail salon trips with friends. Whether she’s laughing with her indie bandmates or chilling with her fashion-loving crew, Lola’s figured out how to mix passion, fun, and self-care in perfect harmony.

Story written April 2020

Harry is 11 years old and lives with Severe Brittle Asthma and Type 1 Diabetes. He was diagnosed with Brittle Asthma aged 4, a rare type of acute asthma which has no triggers and is very hard to control. He has had several admissions to hospital over the past 7 years, and his diagnosis was changed about 2-3 years ago from ‘Brittle Asthma’ to ‘Severe Brittle Asthma’ due to the severity of his attacks and that despite being on all the right medication, it is classed as uncontrolled. Then on the 10th September 2017 aged 8, Harry was also diagnosed with Type 1 Diabetes, with no family history, this came as a massive shock. Harry now has 2 life threatening conditions that he has to live with for the rest of his life. He has good days, bad days and horrific days but his strength amazes us.

Unfortunately on the 3rd January 2020, Harry had a severe asthma attack at home, and on route to the hospital via ambulance, he had a Respiratory Arrest. Luckily the ambulance crew, and all the doctors and nurses in resus were amazing and brought my boy back. We feel so lucky to have him, we know how close it was. Harry does struggle mentally with his health conditions, school is a huge challenge and his anxiety can be so severe that he won’t want to go out and will isolate himself in his bedroom. He has a huge passion for drawing, animation and is an amazing artist, creating cartoon strips and bringing characters from programs he watches, to life.

If you look at Harry, you would think he is a normal 11 year old boy, but the daily challenges that he has to face, and will do for the rest of his life, amazes me. His strength is incredible and he is truly my warrior.

Update 3rd November 2025

Thank you to everyone who sends both Harry & Poppy-Kaye cards, gifts or even just a heartfelt letter checking in on us all. Harry’s health has been really good the last few months. We have had some stubborn sickness days but overall Harry is doing well. He has now started college doing Creative Media and Poppy is now in Year 10 prepping for GCSE’s next year. Once again, thank you to those who decide to choose Harry or Poppy from the pals list, to send something to them. It always has been and will be greatly appreciated

Update 19th October 2024

Harry: has started his final year at secondary school and is starting to look into his options for college. Harry is really into his Art, Animation, VFX and Gaming Development. It is Harry’s passion to seek a career within the creative industry and expand/explore new skills. He has been writing his own story for over 3 years, and his dream to is bring his characters and story to life through animation and digital talent. 

Health wise, Harry is doing well. We have been very lucky to have no recent hospital admissions or worrying scares. This of course, has allowed Harry to shine and grow, being able to concentrate on his education and he is becoming a very well mannered and caring young man.

Harry’s interests are: Computers, STEAM ( one of the most popular digital video game distribution platforms to buy and play video games), Manga Series (such as Demon Slayer, Jujutsu Kaisen), Five Nights at Freddy’s (FNAF) and also playing games such as TF2 (Team Fortress 2) and Overwatch (Xbox One)

Poppy Kaye has had a tough start to her academic year. She is currently having a few health issues herself but finds comfort in having such a good relationship with her brother, who always cares and looks out for her. Poppy always enjoys reading any post that is sent to her, especially photographs of people’s own cats! She has a very loving and sensitive side to her, and when she receives items, she is always so grateful that someone has taken the time to look at her interests and send her a gift.

Poppy interests are: Jelly Cat plushies, Hatsune Mika Figures, crystals and gems, Manga Series (such as Demon Slayer, Jujutsu Kaisen), Five Nights at Freddy’s (FNAF). Poppy enjoys shopping especially at Smyths & HMV. Poppy loves all animals, but especially kittens, ducklings & rats!

Update 3rd February 2024

Harry has been able to attend his school most days, and is thriving really well. He is now in Year 10 and has been producing some great work in IT, Food Technology & Art (he was named Artist of the Week recently).

Health wise has been a whirlwind. Harry’s asthma is very well controlled at the moment, and his asthma team are really pleased with the stability of it. Unfortunately the same can’t be said of his Diabetes. In September, Harry was extremely poorly whilst on a Scouts Weekend. His blood sugar levels were unreadable because they were so high, and his ketone levels were at a high of 6.2 (they are supposed to be less than 0.6). Once we arrived at the hospital, they rushed us through to resus where we was told that Harry was in DKA (Diabetic Ketoacidosis – a serious complication of diabetes that can be life threating). We was told that Harry was moments away from falling into a diabetic coma. This of course was a stressful time for all of us, and another unwanted experience of us nearly losing Harry. Due to Harry’s medical issues, he does experience depression and his mental health is affected. He also has a diagnosis of Autism, so he has a lot to cope with. He’s not a little boy anymore, and turning into a handsome (taller than his Mum) teenager. I’m extremely proud of everything that is thrown at him, and how he manages his day to day life.  

Harry’s interests: Likes to collect figures and plushies of Pikmin, Five Nights at Freddy’s & Pokemon. Harry enjoys editing/creating his own animations & videos and regularly uses a PC program called STEAM. He also loves rollercoasters and going to Chessington & Thorpe Park (we are yet to visit Alton Towers – it’s on the to-do list).

Poppy-Kaye’s interests: Likes Nintendo Switch, Animal Crossing. Poppy is a huge animal lover, her favourites being cats & ferrets. She also enjoys collecting crystals (she has a huge collection!) and attending Theme Parks with Harry.

Update 26th August 2022

Harry continues to have good and bad days with his health. The hot weather lately has had a major reaction to his diabetes levels, which has had a knock-on effect his asthma and mood. He has been feeling quite upset, emotional and withdrawn. He has spent most days of the summer holidays on his computer, continuing his animation and creating videos online. We continue to appreciate all post that is sent to us. Thank You 

Update 31st March 2021

Harry has had a bit of a testing time the last few months, with some close calls of having to go into hospital. Luckily we was able to avoid this, although he has still been quite poorly and it’s been heart-breaking to see after him being so well. Harry has had to miss some time from school but we’re hoping he will be able to return full time very soon! We are all very much looking forward to the upcoming Chessington Trip in May as both Harry & Poppy-Kaye are massive rollercoaster fans and Chessington is their favourite place to go. If they could, they would go on The Vampire ride non-stop! Thank you again to everyone who has sent cards/letters and gifts to Harry & Poppy-Kaye, I’m sorry that I can’t thank each and every one of your personally, but please know it is also appreciated!

Update 30th October 2021

Harry has had a very busy month with new beginnings as he has started attending a specialist senior school. It’s a much smaller school which has a max of 6 students per year group, caters for those with medical conditions/Autism yet still works along the national curriculum. Harry is very excited and looking forward to his next adventure. We have been very lucky with Harry’s health and have not needed any hospital trips or admissions lately. We continue to appreciate ALL the post Harry and his sister receives. Getting cards/gifts from all the over the world is very humbling, and knowing that people far, far away from us, in different countries like New Zealand and France, are taking the time to write to Harry. Thank You So So Much! 🙂 xx

Update 14th June 2021

Harry has been a bit poorly on and off for the last couple of months. Further investigation is needed for Harry as the hospital feel that there may be an underlying problem which is affecting his lungs, which then has a knock on effect with his Asthma. Tests and scans may be needed to take place but this is something that will be decided within the next couple of months. Harry is still not fully back at school, and is currently on a reduced timetable. Harry is struggling mentally with everything he is taking on but we are embracing each day one step at a time. We still hugely appreciate all post that is sent to both Harry and his sister, Poppy-Kaye

Update 26th March 2021

Harry’s health has been stable since the New Year started. He is still currently shielding but is due to return to school after Easter. Harry has now also been given a diagnosis of Autism. Something we have been in the process of for 18 months. His asthma has been good so far with no hospital admissions needed and his diabetes has been controlled. Harry still has daily struggles with with health and now his diagnosis of Autism but on the whole, he is doing well. Thank you to everyone who has sent Harry and his sister Poppy-Kaye letters and parcels. It’s appreciated so much.

Update 6th February 2021

Harry has been home schooling since the end of November due to being classed as clinically vulnerable and having confirmed covid cases within his school. Despite this, Harry has been having repetitive severe asthma attacks and has had medication increased and new ones issued. A few occasions we have been close to being admitted to hospital but luckily we were able to control it at home. Harry is quite enjoying being at home as he feels safer and isn’t missing school at all. He really enjoys receiving and opening his post and we are so appreciative of everyone who thinks of him and his little sister.

Update 20th August 2020

Harry has Severe Brittle Asthma and Type 1 Diabetes. Both of these conditions have a major effect on Harry’s life daily. With his diabetes, he has to inject insulin before or after every meal, and he can suffer very low or high blood sugars which needs to be treated quickly to avoid any more harm or damage to his body. This has a major effect on his mood and what activities he can take part in within school and socially. We are approaching 3 years of his diagnosis and Harry still struggles to adapt to this way of life. His asthma is very unpredictable. Brittle Asthma is a rare form of severe asthma. It is difficult to control and can develop into a life threatening attack. Unfortunately Harry had a Respiratory Arrest in January due to his asthma. Thankfully he made a full recovery although he has been admitted again recently in June due to a persistent cough which triggered attacks. Harry has regular appointments due to his conditions, at least once every 2-3 months.

Update 7th June 2020

Harry is currently well, but we did spend some time in hospital a couple of weeks ago after having repetitive severe asthma attacks. His diabetes control is currently poor as he’s reluctant to self care, but it is not causing him any illness due to me having to take full responsibility

I honestly can’t believe the amount of post that both Harry and Poppy have received in such a short amount of time of being with you. Its truly heartwarming and I’ll be forever grateful for people’s generosity and the time they have taken to address them both. Thank you to everyone from England, to Scotland to New Zealand to Belgium! who have welcomed us to the Postpals family xxx