Rex’s Story
Rex was diagnosed with Stage 4 high-risk neuroblastoma in May 2025 at just three years old. His mum Sarah and sister Sophie, reflect on the past year and Rex’s courage throughout his treatment…
It all started in March 2025, with what we thought was a cold. However, after it lasted longer than normal, we called 111. He was diagnosed with a viral infection and we were told to bring Rex back in if we noticed any changes.
Rex then began to limp when walking so we knew something was wrong. It was then he was admitted to Southampton general hospital and began tests. They first suspected Wilms' tumour, however after tests and scans it was confirmed to be neuroblastoma.
“I was on holiday when Rex got his diagnosis and hearing my mum say those words was honestly devastating. They are never the words you want to hear. It was so unexpected, and with Rex only being 3 years old, it was the worst news we had ever heard.” - Sophie
We had never even heard of neuroblastoma, nor could we even spell it. We made the big mistake of googling and going down a huge rabbit hole which is possibly the worst mistake we made.
He started chemotherapy almost immediately after we found out he had neuroblastoma.
“Rex’s diagnosis turned our world upside down. As a mum, nothing prepares you for watching your child go through something so frightening, and it has affected every part of my life. The emotional strain has been immense, and the financial pressure added another layer of worry during an already impossible time. I had to make the heartbreaking decision to leave my job as a funeral consultant so I could be with Rex full-time, advocating for him and supporting him through every step of his treatment. It took a real toll on my mental health, but slowly, day by day, I’m finding my feet again, holding onto hope, strength, and the determination to keep going for Rex and our family” - Sarah
In the hospital, Rex made a friend who was also diagnosed with stage four neuroblastoma on the exact same day. Their treatments are currently in sync so they have become best friends and it always brightens Rex's day when he sees her.
“As his sister, this journey has changed my life in ways I never expected. Over time, I’ve learned how to cope and take on responsibilities I never imagined, from learning how to use his NG tube, to supporting him day to day. When he was admitted to hospital, my mum and I took turns staying with him because it can be so physically and emotionally draining, but we do it because he needs us.
“While I’ve been able to process what’s happening, my younger siblings find it much harder. They’re still trying to understand something that feels frightening and overwhelming, and they don’t always know how to express that. Cancer doesn’t just affect one child, it affects the whole family, and every sibling experiences it differently.” - Sophie
We learnt that there was nothing we could do except support Rex and be by his side every step of the way, and to show him how strong he is. No one realises how strong children actually are, but Rex is one heck of a superhero.
A big thank you to Sarah and Sophie for sharing Rex’s story.
Funding vital research. Saving young lives.
We fund vital research to develop new and more effective treatment for children with neuroblastoma. But we need your help. Please donate today and join the fight against childhood cancer.
