Jesse the brave 🦁💙

JESSE THE BRAVE 

(Marnie dightons post) 

I am raising money for The Royal Marsden, who have shown the most incredible care, compassion and expertise for my son Jesse, aged just six. Jesse was diagnosed with acute lymphoblastic leukaemia (ALL – T cell) on 07/01/2026.

The day our lives changed forever- worst day of our lives — any parent’s absolute worst nightmare — being told the words “your child has leukaemia.”

Alongside fundraising, I also want to raise awareness.

As parents, we know our children better than anyone. Please trust your gut instinct.

Jesse did not present with the typical symptoms people associate with leukaemia. There was no unexplained bruising, no loss of appetite, no weight loss and no fatigue. In fact, just two days before his diagnosis, he was running around, laughing and dancing at a party like any other happy six-year-old.

Jesse presented in a way we had never heard of and would never have associated with leukaemia — priapism. His penis was erect for over four hours. In Jesse’s case, it lasted for over 20 hours.

We took him to the GP at 12:30pm the previous day and were told it was probably a urine infection. He was given antibiotics and a steroid cream. However, as the day went on, something didn’t sit right with us. By 8pm that evening, we made the decision to take him to Epsom Hospital A&E.

After an incredibly long and frightening seven hours, we were told Jesse needed to be transferred to St George’s Hospital to see a surgeon and specialist team. Further tests were carried out, and that is when everything changed.

Jesse’s white blood cell count was 617.

For a normal child his age, this should be roughly between 5 and 15.

He was also found to be severely anaemic, with an enlarged spleen, liver and lymph nodes. Shortly after, our worst nightmare was confirmed.

Jesse then spent 10 days receiving outstanding care in PICU and Pinckney Ward at St George’s Hospital. During this time, Jesse underwent two surgeries to drain the blood from his penis — a truly terrifying experience for such a young child and for us as parents. The care, professionalism and compassion shown by the teams in both PICU and Pinckney Ward were absolutely exceptional, and we will be forever grateful for everything they did to keep Jesse safe and comfortable during such a critical time.

Since then, Jesse has started his chemotherapy treatment and steroids, and we are incredibly relieved to say that he is responding amazingly well. Despite everything he has been through, Jesse continues to show strength, bravery and resilience far beyond his years.

The care Jesse has received — particularly from The Royal Marsden — has been nothing short of extraordinary. The doctors, nurses and support staff have not only treated Jesse’s cancer, but have supported our whole family through the most terrifying time of our lives. Their knowledge, kindness and dedication mean more to us than words can express.

This is why I am fundraising.

Every donation helps support vital research, treatment and care for children like Jesse, and for families who suddenly find themselves walking a path they never imagined.

Thank you for reading, for supporting, and for helping us raise awareness.

And please — if you ever feel that something isn’t right with your child — trust your instinct. It could make all the difference