Our beautiful boy Jesse, now 4 years old, has been bravely fighting a rare childhood soft-tissue cancer called rhabdomyosarcoma since he was just 16 months old.
In July 2022, school had just broken up for summer holidays when we had to make a visit to A&E as Jesse was complaining of abdominal pain. Doctors realised that Jesse was in urinary retention due to a large tumour in his pelvis (the size of an orange). We were quickly moved to Great Ormond Street Hospital where diagnosis was made and treatment began. We were told that although this cancer is extremely rare, outcomes with conventional treatment had around 70% survival rate.
(Through every round of treatment, Jesse has always kept his playful sense of humour)
After his initial diagnosis, Jesse endured 6 weeks of intensive proton beam radiotherapy under daily general anaesthetic and 12 months of chemotherapy. His incredible strength and the care he received led to what we hoped would be a lasting recovery. For a time, we allowed ourselves to breathe again.
Unfortunately in Spring 2025 routine scans revealed that Jesse’s tumour had begun to rapidly grow again, and we were faced with limited treatment options through the NHS. We have been searching desperately for better options that could genuinely change his outcome. This has meant seeking a more personalised approach to Jesse's treatment as the standard treatment on offer has not changed for over 30 years and associated outcomes for relapsed disease have remained extremely poor.
(Keeping his spirits high through treatment)
December 2025
Having undergone 4 rounds of the standard chemotherapy protocol which has only kept the tumour at bay, we now have a new and hopeful opportunity. Jesse has been offered specialised chemotherapy with adjuvant regional hyperthermia treatment in Germany — a highly targeted approach that research shows can be particularly effective for sarcoma. This treatment could significantly increase the chances of successful surgery and improve Jesse’s long-term prognosis. For the first time in a long time, we feel that there is a real possibility of some significant progress in gaining control of this disease.
This treatment is not available through the NHS, and we need to act quickly. At the moment we are aiming to raise enough to fund this treatment as well as a range of integrative therapies that keep Jesse strong and support him with the side effects of ongoing chemotherapy.
- 2 rounds of specialised chemotherapy/adjuvant hyperthermia and associated medical procedures and care in Germany including travel and accomodation - £30,000
- Personalised testing, consultancy and treatment planning - £5,000
- Integrative therapies - From vitamin supplements to high-dose IV therapy - £10,000
Even though this journey has been unbelievably hard, we are so grateful for the peace and strength that comes only from above. God has kept Jesse strong throughout and we remain full of hope. We are incredibly blessed to have the support and prayer of so many amazing friends and family on this journey and we genuinely feel we cannot do this without your help.
Every donation, no matter the amount, brings Jesse closer to the treatment that could transform his future. Even sharing this page widely can have a powerful impact.
Thank you, from the bottom of our hearts, for supporting Jesse and helping us reach the care that offers him his best chance.
If you’d like to talk to us about Jesse’s condition or have any questions about his treatment, please get in touch - we’d love to hear from you.
Simon, Anna, Jesse & Jonah x
Further reading on rhabdomyosarcoma and his treatment for those interested:
What is Rhabdomyosarcoma? (MacMillan)
• Lancet Oncology (2010): Regional hyperthermia + chemotherapy improved survival in high-risk soft-tissue sarcoma.
• JAMA Oncology (2018): Long-term data confirming survival benefits of adding hyperthermia to chemotherapy in high-risk sarcoma.
• Cancers (2021): Feasibility + promising outcomes using hyperthermia with chemotherapy in paediatric sarcomas.
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