Jamie was diagnosed with high-risk metastatic fusion-positive alveolar rhabdomyosarcoma in May 2023—words that rocked our world and changed our lives forever.
His care was led from Addenbrookes Hospital, Cambridge.
He battled this devastating disease with extraordinary courage for two and a half years, achieving remission twice. At first, we believed remission meant he was cured, but we soon learned that sadly, this was not the case.
Jamie underwent nine rounds of IVADO chemotherapy, 23 rounds of radiotherapy, oral maintenance treatment with vinorelbeine and cyclophosphamide, and 14 rounds of VIT chemotherapy. Despite enduring every treatment available to him, the disease returned.
When we were told there was no cure, we explored every possible option. We tried to enrol Jamie in two clinical trials, but both fell through. As a final attempt, we fundraised to access private treatment in Germany, where he received multiple rounds of immunotherapy and chemotherapy unavailable in the UK. We believe this treatment gave us precious extra time together as a family.
Tragically, Jamie died on 30 November 2025, aged just 15. Our hearts are forever broken. We miss our beautiful boy more than words can ever express.
Rest peacefully, our beautiful angel.
Jamie discovered a lump on his neck while swimming on holiday. Upon our return home, the doctor believed it was an infection and prescribed antibiotics. The lump continued to grow and became increasingly painful.
After several GP and hospital visits without answers, we took him to A&E, where he underwent multiple tests and scans. We didn’t leave the hospital for two weeks. Eventually, we received the devastating diagnosis of rhabdomyosarcoma—a disease we had never heard of and never wanted to.
Despite living through what felt like a nightmare, we stayed as positive and hopeful as we could for Jamie. He remained incredibly calm and took everything in his stride. We promised him we would fight this together and believed he would be okay. None of us knew what lay ahead.
I immediately gave up work to care for him. Overnight, life became hospital appointments, treatment schedules and constant worry.
Jamie endured nine gruelling cycles of chemotherapy and 23 rounds of radiotherapy. The treatment was relentless. He spent more time in hospital than at home, regularly battling infections, high temperatures, blood and platelet transfusions, and severe side effects. We were barely home for six months.
The chemotherapy left him desperately ill. He suffered constant nausea, severe exhaustion and painful mouth ulcers that sometimes left him unable to eat or speak. Feeding tubes became essential, and watching him endure repeated procedures while awake is something I will never forget.
During his seventh cycle, Jamie developed an allergic reaction that caused violent twitching resembling a seizure. It was terrifying, but thankfully the reaction passed and his treatment was adjusted so he could continue.
After every cycle he was too weak to walk, returning home in a wheelchair before spending days recovering on the sofa. If he was fortunate, he would have a few good days before the next cycle began. More often, he was back in hospital with infections and transfusions. It was relentless.
Through it all, Jamie remained unbelievably brave, stoic and positive. The only times he became upset were before treatment, knowing exactly what lay ahead.
Eventually, the chemotherapy and radiotherapy achieved complete remission. Jamie moved onto maintenance chemotherapy at home. His hair began to grow back, his energy slowly returned, and he went back to school and even football training. For a while, we felt like we had our boy back.
Sadly, around six months later, new scans revealed the cancer had returned aggressively in three places. Once again, our world fell apart. Jamie began 14 rounds of VIT chemotherapy. Although he refused another Hickman line, choosing instead to have daily cannulas fitted, he endured every treatment with remarkable courage.
The side effects became even harsher. Mucositis left him unable to eat or speak, and his weight dropped dangerously low. He eventually underwent surgery to have a PEG feeding tube fitted to keep him strong enough to continue treatment.
Against the odds, Jamie achieved a second complete remission. We even managed a family holiday to Spain. But during a routine scan, the cancer returned yet again.
Knowing our options were running out, we searched tirelessly for new treatments. Two clinical trials were unsuccessful, so our community came together to help us raise funds for private treatment in Germany. Jamie received immunotherapy and additional chemotherapy unavailable on the NHS.
Although this treatment was not a cure, it gave us something priceless—more time together as a family.
Jamie was the most stoic, calm, kind, easy-going and loving boy. He loved being at home with his family and friends, playing football, gaming, and watching films and box sets with his brother, cousin and best friends. He had the brightest blue eyes, the biggest smile and the cheekiest laugh, lighting up every room he entered. These were just some of the qualities that made him so loved by everyone who knew him.
We grieve his loss every moment of every day and the life he fought so fiercely to hold on to until the very end.
We miss Jamie every second of every day. His courage, strength and kindness continue to inspire us.
No parent ever wants to hear the words, “Your child has cancer.” They are devastating beyond description. Jamie had always been fit, healthy and football-mad, playing five times a week and captaining his school team. He had his whole future ahead of him.
I immediately gave up work to care for him. Overnight, life became hospital appointments, treatment schedules and constant worry.
The children’s cancer ward was both comforting and heartbreaking. Being surrounded by families facing the same unimaginable journey reminded us we were not alone, while seeing so many seriously ill children was almost impossible to bear. Even now, I am haunted by the constant sound of chemotherapy pumps and hospital monitors.
Treatments for rhabdomyosarcoma have changed very little in around 40 years. Childhood cancers continue to receive disproportionately low levels of research funding, leaving families to face devastating diagnoses with limited treatment options.
Children deserve better. They deserve kinder treatments, more research, and greater hope for the future.
It is now my mission to raise awareness of rhabdomyosarcoma and stand alongside the parents at Alice’s Arc to help improve the lives of other children and families facing this devastating diagnosis and this is why I proudly support Alice’s Arc and their work to fund research into better treatments for rhabdomyosarcoma, raise awareness of this devastating disease, and continue Jamie’s legacy so that other children and families may one day have a different outcome.
Read all the latest fundraising news, charity news and commentary on childhood cancer.
A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
Alice’s Arc: Registered in England & Wales
Charity Number : 1164253
Alice’s Arc, US Inc: A registered 501(c)(3) public charity under the US Internal Revenue Code EIN: 88-4312752
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