The family of Felix Disney-Moore, now aged four, from Sandhurst, Berkshire, found themselves relieved the second cancer was leukaemia as it meant the first hadn’t spread
A mum of a young boy who has had two rare cancers before the age of three has told why she first went to a doctor with him after seeing something unusual.
Felix Disney-Moore, now aged four, had no symptoms until his mum, Hayley Disney, 40, spotted a white glow in his left eye and took him for a check-up at Frimley Park Hospital, Surrey. He was urgently referred to Royal London Hospital and diagnosed with bilateral retinoblastoma – a form of eye cancer that affects both eyes – and the family were told he’d need his left eye removed to save his life.
But a day before he was due to have his surgery, an MRI revealed a third tumour – and he was diagnosed with trilateral retinoblastoma with leptomeningeal disease instead – and Felix had to undergo eight months of aggressive chemotherapy.
The family hoped they were out of the woods but a post-treatment scan three months later picked up a mass on his liver. Tests revealed Felix had lymphoma – a type of blood cancer – and he has spent the last two years undergoing chemotherapy and should finally finish in July.
Hayley and Felix’s dad, Tom Moore, 44, a retail manager, are fundraising to take Felix and his sister Thea, seven, to Disney World, Florida. Hayley, who previously worked as the head of operations for a digital app, from Sandhurst, Berkshire, said: “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 everyday. He still has such a zest for life.”
Hayley suddenly spotted the glow the day after Felix’s second birthday in August 2022. She took him to hospital to get it checked out, told he was blind in his left eye, and was then urgently referred to Royal London Hospital.
A week later a red reflex test – looking at the back of the eye using a light – revealed Felix had bilateral retinoblastoma and the family had to come to terms with their son losing his left eye to save his life. Hayley said: “You don’t have time to process. You just have to do. It was incredibly daunting.”
But the day before his surgery Hayley received a phone call from Great Ormond Street Hospital (GOSH) telling her a pre-op MRI scan had revealed a third tumour in his pineal gland and a leak into his brain. This meant Felix’s new diagnosis was trilateral retinoblastoma and he would need an aggressive chemotherapy instead.
Hayley said: “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 started on five cycles of chemotherapy in September 2022 – after each cycle he became extremely unwell. After his last 40 day stay on a high dose Felix had a stem cell transplant in March 2023 and the family hoped they would be able to have a normal life again.
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.” But after Felix’s post-treatment scan in June 2023 the family were given bad news.
Hayley said: “They could see something on his liver.” Felix had all sorts of tests including biopsies, lumbar punctures, MRIs and ultrasounds and doctors thought his retinoblastoma had spread which would have meant there was nothing more they could do.
Hayley said: “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.”
But the family were relieved when a PET scan revealed it was actually leukaemia – and later reconfirmed as lymphoma – and treatable. 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 start more chemotherapy at Southampton Hospital in July 2023. Hayley said: “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.”
Felix has been going through chemotherapy for the last two years – and also faced a sepsis scare when his port became infected – but is now nearing the end of treatment in July 2025. He has been left with damaged hearing due to treatment and will have to wear a hearing aid for the rest of his life but has always kept a smile on his face.
Hayley now wants to give some normality back to her children and treat them to a trip to Disney World. But the family have run out of savings after using what they had squirrelled away over the last few years.
Their friends have set up a fundraiser to raise money to get the family on holiday following the end of Felix’s treatment – as Hayley still fears the cancer could return. Hayley said: “They deserve the world. It’s a massive chunk of their childhood taken away. They deserve something fun. I want something special for them.”