Felix Disney-Moore’s family were told that he would need his left eye removed to save his life
The parents of a young boy who was diagnosed with two rare forms of cancer before turning three felt “relieved” when they learned he had blood cancer, as opposed to a spread of the disease in his eye, because it meant he had “a chance of survival”. Four-year-old Felix Disney-Moore showed no signs of illness until his mother, Hayley Disney, 40, observed a peculiar white glow in his left eye and promptly sought medical attention at Frimley Park Hospital in Surrey.
An urgent referral to the Royal London Hospital led to a diagnosis of bilateral retinoblastoma, a type of eye cancer that affects both eyes, and the devastating news that Felix would need to have his left eye removed to save his life. However, just a day before his scheduled surgery, an MRI scan uncovered a third tumour, leading to a revised diagnosis of trilateral retinoblastoma with leptomeningeal disease, which necessitated eight months of intensive chemotherapy.
The family’s ordeal seemed to be easing, but a follow-up scan three months after treatment revealed a mass on Felix’s liver. Further testing confirmed that Felix was also battling lymphoma, a form of blood cancer, and he has since been enduring chemotherapy treatments for the past two years, with hopes to complete them by July.
Hayley and Felix’s father, Tom Moore, 44, a retail manager, are now raising funds to give Felix and his sister Thea, seven, a trip to Disney World in Florida, USA. Hayley, a former head of operations for a digital app from Sandhurst, Berkshire, recounted the moment she detected something amiss: “I noticed a slight white glow in his eye and thought ‘I’ll go get it checked out’.
“Literally everything changed. He was such a happy baby we thought ‘are we going to lose him?’. But he’s so amazing. Felix astonishes me every day. He still has such a zest for life.”
Hayley noticed the glow the day after Felix’s second birthday in August 2022. She rushed him to hospital for an examination, where they discovered he was blind in his left eye, and he was immediately referred to Royal London Hospital.
A week later, a red reflex test – which involves shining a light at the back of the eye – revealed that Felix had bilateral retinoblastoma. The family had to grapple with the reality that their son would lose his left eye in order to save his life. Hayley said: “You don’t have time to process. You just have to do. It was incredibly daunting.”
However, on the eve of his surgery, Hayley received a phone call from Great Ormond Street Hospital (GOSH) informing her that a pre-op MRI scan had uncovered a third tumour in his pineal gland and a leak into his brain. This led to a revised diagnosis of trilateral retinoblastoma for Felix, necessitating aggressive chemotherapy treatment.
Hayley shared: “GOSH had seen one other case in the last 10 years – now 12. It was a lot to process. There were no statistics. We had absolutely no clue on success rates. It was really frightening.”
Felix embarked on a challenging journey with five rounds of chemotherapy starting in September 2022, each cycle left him severely ill. His hardships continued with a prolonged 40-day hospital stay during which he underwent a high dose treatment and stem cell transplant in March 2023, igniting the family’s hope for a return to normalcy.
Hayley said: “We found ourselves in this new world of just waiting, watching every breath Felix took, wondering. But we started to get to life. We went back to work, Felix started to build his strength.”
However, the post-treatment scan in June 2023 delivered a devastating blow to the family when an abnormality was discovered on Felix’s liver, Hayley revealed: “They could see something on his liver.”
Subjected to an array of tests such as biopsies, lumbar punctures, MRIs, and ultrasounds, there were fears that Felix’s retinoblastoma had metastasised, potentially leaving no options for further treatment.
Amidst the turmoil, Hayley agonised over the unthinkable task she faced: “How was I going to explain it to Felix? How do you explain to your child they are going to die? He’d been getting stronger and enjoying life.”
In a stunning turn of events, the family’s anguish was replaced with immense relief when a positron emission tomography scan indicated Felix instead had treatable leukaemia, which was later confirmed as lymphoma.
Describing the oscillation of emotions, Hayley said: “It was a massive shock to them that it came back as treatable. It was feeling very wrong to be celebrating your child has lymphoma. But it was amazing news.”
Felix had to undergo further chemotherapy at Southampton Hospital in July 2023. Hayley discussed the toll it took: “It hit Felix hard. He’d already gone through this gruelling eight months of high level chemotherapy. He gained a lot of weight and he stopped walking.”
After two years of chemotherapy and a daunting sepsis episode due to an infected port, brave Felix is finally approaching the end of his treatment in July 2025. Although left with impaired hearing necessitating a lifelong use of a hearing aid, Felix has remained cheerful throughout his ordeal.
Hayley is eager to restore some normalcy to her children’s lives with a dream trip to Disney World. However, the family’s funds have been depleted after exhausting their savings over the past few years.
Kind-hearted friends have rallied to launch a fundraiser aiming to send the family on holiday once Felix completes his treatment – a gesture that touches Hayley deeply as she continues to worry about a potential cancer relapse.
Emotionally, Hayley stated: “They deserve the world. It’s a massive chunk of their childhood taken away. They deserve something fun. I want something special for them.”
To support the family and fulfill their Disney wish, donations can be made here
