Raye’s mum, Bronte, said, “When Raye began to wean, we would feed her in the kitchen in her highchair, which was under a bright light. Her right eye looked like a fisheye. We just put it down to the lighting. It wasn’t until a few weeks later, at eight months old, I took a picture of Raye and my son in the bath playing and the flash accidentally went off. I looked at the picture, and her right eye was glowing white. Her other eye was red from the flash and so was my son’s. On 19 December 2024, I investigated it, and something didn’t sit right with me, as everything seemed to relate to eye cancer.”
The Childhood Eye Cancer Trust (CHECT) says typical signs of retinoblastoma include a white glow in the eye – which may only appear in certain lighting or in a photo – a squint, a change in the appearance of the eye, or a swollen eye. Often, only one sign or symptom is present.
Bronte said, “I had never heard of retinoblastoma, but her dad had seen something a few years ago on social media about the ‘white glow’. We didn’t know too much about it, in all fairness. I think, as parents and adults, we bury our heads in the sand when it comes to children with cancer, because we never think it happens to children anymore. Since I’ve opened up on social media about it, I’ve had many parents reach out to me for advice or support following Raye’s diagnosis on 10 January 2025.”
Bronte added, “The next morning, I rang my local GP, but the receptionist, after speaking with the GP, told me over the phone it was nothing to worry about and that an appointment wasn’t needed as her eye wasn’t red. I mentioned she had a white glow, and she said it was most likely just the lighting. I was told that if an appointment became available that day, Raye could come in. I didn’t want to wait, so I walked into Specsavers. I explained my concerns, and Raye was seen within an hour. When the light was flashed into her right eye, she didn’t flinch, but when flashed in her left eye, she reacted. It was silent in the room. They said they would refer her to the emergency eye clinic, but being so close to Christmas, she would be seen after Christmas. I did ask if it was retinoblastoma, but he said it could be many things and that we needed to wait for the thorough checks at the local hospital. The GP rang back with a cancellation, but when we got there, they didn’t have the equipment to do the red reflex check needed. If it wasn’t for Specsavers, Raye wouldn’t have been referred. I found it absolutely ridiculous that I was worried my baby had cancer, and they didn’t do anything. I left knowing I had to make Christmas special for my baby and my eight-year-old, with a daunting feeling of what was to come for our family.”
Raye had her eyes dilated at the hospital on 2 January 2025.
Bronte said, “At my hospital appointment, the specialist had a thorough look, and he said, ‘It’s absolutely nothing to worry about.’ I asked, ‘Do you think it’s retinoblastoma?’. He said, ‘Absolutely not’. We were sent away, and he said that when the senior doctor is in the following week, she will have an eye test and see what the next stage is. We left so relieved, and a huge weight lifted off our shoulders! We thought all that worrying was for nothing, and with it being the start of a new year, we just wanted to get on with our lives.
Bronte added, “We had a follow-up appointment date on 8 January for her eye test, the same test she had the week before. We quickly saw how she was completely blind in her right eye during the eye examination. She had the special glasses on to cover her left eye. Her right eye was flickering from side to side, and she was very distressed. My heart sank, and I looked at my partner – he had tears in his eyes. I have never seen him cry or get upset since the moment we got together years ago.”
Bronte said, “We were sent to the senior eye doctor at the Royal Gwent. He did an in-depth examination and said, ‘I’m so sorry, Raye has retinoblastoma, her tumours look aggressive.’ I remember just falling to the floor, holding my baby. I was shouting ‘No, No, No, you are wrong! We were told last week it was nothing!’. He was completely silent and respected that our whole world had been turned upside down. His colleague came in to offer support. We had no idea what was to come. We were sent to Birmingham Women’s and Children’s Hospital the next day, but we stayed in a hotel nearby to be seen on the 10 January 2025 for an examination and check. It was then confirmed she had retinoblastoma – not only two vigorous tumours in her right eye, but also one growing in her left! I remember being sick in my mouth and thinking, ‘How is this disease growing in my baby?’”.
Bronte said, “I remember ringing my family telling them and being in disbelief because the previous week we had been told everything was fine. I think we all took it worse this time, as we had been reassured that everything was okay and I was in complete disbelief! My son came home from school after we returned from Birmingham Women’s and Children’s Hospital. He could see the pain in my eyes and asked how Raye was doing after her check-up. I said, ‘Dawson, I’m so sorry, Raye has cancer in her eyes, but we are going to try our best to be there for her and help her.’ At first, he didn’t react and seemed to take it well. He went to bed that night and completely broke down. I’ve never seen him like that. He said, ‘I don’t want my best friend to die.’ We sobbed and cried for hours. I couldn’t reassure him as much as I would have hoped because I was completely broken.”
Raye was diagnosed with bilateral retinoblastoma – cancer in both eyes.
Bronte said, “Chemotherapy was the best option for now, alongside laser therapy. We were told Raye would have a central line fitted called a Hickman line to administer chemotherapy. This would be administered at Noah’s Ark Children’s Hospital, closer to home. We were told that if her tumours didn’t react as well as they wanted to the chemotherapy, then removal of her right eye would be the best option. To save her vision, it was critical to get her chemotherapy started as soon as possible. They didn’t know if the tumour had spread through her optic nerve, as they couldn’t see behind it – her whole eye was covered with the two tumours. We were told she would need an MRI scan, a Hickman line fitted, and chemotherapy as soon as possible.”
Bronte added, “Raye had chemotherapy every month, and as soon as she received it, she would be admitted with a temperature. She had many line infections, line repairs, and two new lines fitted. Her last chemotherapy was in June 2025. She spiked a temperature, and so the hospital took her line out as soon as they could in the following days. They were concerned about another infection. When you think you already have enough to worry about, there’s always something going wrong along the way. I’ve had to give up work to look after Raye due to the demands of appointments.”
Bronte said, “Raye is doing amazing now! She responded so well to chemotherapy. She still has some activity in her tumours, but they are being treated with laser therapy. It was a very long six months of chemotherapy, with hardly any time at home and juggling both my children. She is navigating life with just one working eye, and you can tell because she is reaching all her milestones. She is still attending Birmingham Women’s and Children’s Hospital to have laser therapy every three to four weeks, and she will be seen very frequently until she is five but will also remain under the retinoblastoma care team until she is 16. I just hope and pray nothing grows and that everything keeps going in the right direction.”
The Childhood Eye Cancer Trust (CHECT) is urging parents and healthcare professionals to be aware of the most common possible symptoms of eye cancer – a white glow in the eye in a flash photo or in certain light, and a squint.
Richard Ashton, Chief Executive of CHECT, said: “Retinoblastoma is rare, with around one baby or young child diagnosed in the UK each week. Symptoms can be subtle, and children often appear otherwise well – which makes it hard to recognise when something is wrong. In just under half of all cases, a child must have an eye removed as part of their treatment.”
Richard added: “Raye’s story shows the importance of retinoblastoma awareness among health professionals. We are grateful that Raye’s diagnosis was confirmed and that she was able to receive treatment. If you’re worried that a child you know may have retinoblastoma, please take them to a GP or optician as soon as possible. You can also contact the Childhood Eye Cancer Trust support team at support@chect.org.uk – they can provide information to take to your appointment. The Child Cancer Smart campaign advises health professionals to refer to the local on-call paediatrician if a child has had three persistent symptoms, has visited their health professional three times or had unexplained symptoms for three weeks.”
Bronte said, “From the moment we found out, our CHECT support worker spoke to us for nearly two hours about the grants we could access, what the next steps were and the psychological support we could receive. She did an amazing cover letter for Disability Living Allowance. Three months ago, a van wrote off my car on the way to Birmingham Women and Children’s Hospital. She found out and helped me with a Family Fund car, sending me forms and calling them for me.”
For more information on the signs, symptoms, and treatment of retinoblastoma, please visit chect.org.uk.