Charity Number: 1137175

Freya D

Story written 2026

On the 9th of September 2025 our whole world came crashing down upon us.
Following a summer of fun and 10 wonderful days in Cyprus we returned home to start a new academic year for both of our children but sadly that wasn’t the case for our beautiful 5 year old daughter Freya.
What had started as random episodes of nausea and headaches had turned into daily morning vomits, dizziness and unsteadiness.
Having visited the GP multiple times and not having been listened to, it was by chance we managed to speak with a nurse at our local hospital who arranged an emergency paediatric appointment where Freya was assessed and referred for an emergency MRI.
The images highlighted a large 3cm posterior fossa brain tumour.
We were blue lighted to Birmingham children’s hospital where she had further tests, scans and meetings with surgeons before enduring a 12 hour surgery to remove the tumour from her brain on the 12th of September 2025.
The surgery itself was difficult but because of the tumours location Freya developed posterior fossa syndrome meaning she was unable to walk, talk or swallow.
Freya has faced months of neuro rehabilitation alongside speech and language, physiotherapy and occupational therapy and we couldn’t be any prouder of the progress she has made in this time. She is now talking, walking with support and able to eat a soft diet.
The formal diagnosis of her tumour is Atypical Teratoid Rhabdoid Tumor (AT/RT) subtype TYR.
Freya is following the EURHAB protocol and has so far completed 9 rounds of chemotherapy and 30 sessions of proton beam therapy. She has a few more cycles of chemotherapy still to complete but we continue to pray for a positive outcome and clear scans.

Story Written 2026

Betsie had just turned 3 when she was diagnosed with ALL. She’s had a really rough ride, but despite everything that’s been thrown her way, she carries on with determination, resilience and a smile on her face. After loosing complete use of her legs, she tried and tried to walk again, and through her sheer strength she managed to walk again way before anyone expected her too. She’s had a lot of her childhood taken away from her, not being able to do anything a normal child her age would be able to do. She’s fighting hard, and continues to prove how amazing and strong she really is.

Story Written 2026

Teddy was born with a rare condition called 22q11 distal deletion symdrome, he has had to face a lot of challenges and over 20 operations in his life so far with nore to come. He has gastro problems which we still have no answers to he has a ileostomy and gastric feeding tube, hearing problems, speech impairment and also autism/ADHD.
Although he is such a happy little boy him and his 2 siblings find it very hard to navigate around the hospital appointments and when Teddy becomes very ill he generally ends up unable to walk and ends up in a wheelchair.

Story Written 2026

Samuel has juvenile batten disease. He is registered severely sight impaired and has reduced mobility. Juvenile batten disease is slowly stripping Sam of every skill he has ever learnt, walking, talking. Childhood dementia means that eventually he will depend completely on his family to live day to day. Despite his daily struggles, he has a wicked sense of humour, and there is still a cheeky teenager underneath. Sam’s sister Alice has the same condition and has her own Post Pals page here.

Story Written 2026

Alice has juvenile batten disease. She is registered severely sight impaired and has reduced mobility. Juvenile batten disease is slowly stripping Alice of every skill she has ever learnt, walking, talking. Childhood dementia means that eventually she will depend completely on her family to live day to day. Alice has had a really hard time this year with her emotional wellbeing and anxiety. Alice’s brother Samuel has the same condition and has his own Post Pals’ page here.

Story Written 2026

After failed GP appointments, 2 A+E visits, hospital admissions, Ultra sounds, CT and MRI scans we were told Harriet had Cancer. No one knew what type but all they knew was it was fast growing. Had phone calls from Southampton to say come now. Biopsies taken, central line fitted and emergency chemo began. Then we were told it was Very High Risk Rhabdomyosarcoma. The fight began. Harriet has been such a fighter throughout. 9 rounds of chemo. 28 rounds of Radiotherapy which broke her and now 12 to 24months chemo maintenance. This involves us giving chemo everyday and IV chemo every other week in hospital.
Life will never be the same. They can’t remove the tumor. She’ll need 3 monthly MRIs for 5yrs!
QA and Southampton have been amazing with Harriet’s treatment. We have met some amazing staff and families. No child should have to go through these treatments.
It’s hit us all so hard but we try to rebuild our lives and learn to live and make the most of everyday.
Edith has continued to make us so proud too. No sibling should have to see what she’s seen.

Update 16th July 2026

Today we found out Harriet is doing another 12months chemo maintenance. Her sister Edith was absolutely devastated both girls just want her Wigglies out and to get on with life.

Story Written 2026

Franco was diagnosed with cancer a week before he was due to start school in August 2025. Sadly, he has not been able to start yet.
Franco has missed having days out as we cannot mix much due to the risk of him catching a cold, but enjoys getting out when he feels well enough.

Story written 2026

Maci was born to term but from day 1 didn’t feed well, we persisted for 10 weeks before taking her to our local hospital where we trialled all type of meds/feeds under the guidance of our local team and GOSH until she was 6 months old. She was then transferred to GOSH for her first Hickman line and the start of PN. Whilst on PN at this young age, she was nil by mouth and as she grew the hospital trialled many different types of feed but none seemed to work. We were in and out of the local for the next 5 years. In this time she had a stoma formed to try and help with the feeding and the stomach accepting feed but only for feed to still fail. Then they managed to get her body to accept jejunal feeding which up until January of this year had been working, not without challenges along the way. But this has now been discovered that the feed has been causing acute pain whilst running which led to chronic pancreatitis. Everything the doctors have tried, failed and Maci is now back on PN with a small amount of jejunal feed. This has a major effect on Maci and her quality of life, she rarely makes school due to lack of energy and struggles to keep up with her peers. This is a lot to restart at her age and brings a lot of uncertainty to her life once again.

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.