Yorkshire-based children’s cancer charity Candlelighters is raising awareness of a rare eye cancer, to recognise World Retinoblastoma Awareness Week from 11th May – 17th May 2025.
Emily Wragg, CEO of Candlelighters advises parents: Retinoblastoma (Rb) is a type of eye cancer that can affect young children, particularly those under six. The cancer develops in the cells of the retina, which is the light-sensitive part of the eye. This cancer is rare, though around one child per week in the UK is diagnosed with the condition.
What’s encouraging is that retinoblastoma has one of the best survival rates of all childhood cancers. However, it’s important that parents are aware of the signs of the disease, and the need to have their child’s eyes checked urgently, to be on the safe side.
Emily adds: “Retinoblastoma is rare, and all of these symptoms can be caused by other things, but it’s always best to have your child’s eyes checked out by a GP or optician/optometrist in person as soon as possible.
Candlelighters say that the Childhood Eye Cancer Trust offer some useful advice on spotting the signs of retinoblastoma:
White eye or glow
You might see a white glow in the eye, when your child is in artificial light or a darkish room. Some people notice a white reflection in a photo where a flash has been used. This is sometimes described as a ‘cat’s eye’, or a white pupil. This may only be seen once but in some cases it’s present all the time. The medical term for this white eye reflex or reflection is leukocoria.
Change in iris colour
The iris – the coloured part of the eye – can change colour in one eye, sometimes only in one area.
No red eye
In a photo where one eye has “red eye” (which is normal), the other eye may look black. This can be a sign that something is not right.
Deterioration in sight
Your child’s vision may begin to deteriorate, or they may have had poor vision from birth. You may notice that they don’t focus, fix and follow as well as other children of the same age.
Squint, or turn in the eye
A squint, where the eyes do not look in the same direction, can sometimes be a symptom of retinoblastoma. In most cases, it’s nothing serious, but all children should be checked out just in case.
Red, sore or swollen eye
Your child’s eye may become very red and inflamed for no obvious reason – and with no sign of infection. This symptom is usually accompanied by one or more of the other signs described here.
Even if you have spoken to a health professional on the phone, or video call, it’s very important that your child is seen in person, as the healthcare professional will need to examine their eyes carefully. This will be done by carrying out a fundal ‘red’ reflex test, which involves shining a light directly into the eyes. This is not possible on a video call.
Emily explains that Candlelighters offers support to families affected by childhood cancer, in many ways. They provide practical and financial support for families, funded holidays, talking therapies, wellbeing treatments and support groups for siblings.
Harvey’s Story
When Harvey was two, he was diagnosed with retinoblastoma, a rare eye cancer. His parents, Jill and Ben, had already separated and were co-parenting him and his older brother, Harry. His diagnosis turned the whole family’s world upside down.
Jill says: “It was August 2022 when we got the retinoblastoma diagnosis, Harvey was two. He was coming from the living room into the kitchen and the light caught his eye. The only way I can describe it is it looked gold.
“There’s such a lack of awareness around retinoblastoma that we initially struggled to get an appointment, we were offered one six weeks away. But when we sent in a photo, everything started to move quickly.
“From that point, we were sent to Birmingham Women’s and Children’s Hospital, which is one of the two hospitals in the country that are specialists in retinoblastoma, as it’s such a rare form of cancer. And within a month, Harvey had chemotherapy for the first time. The staff at the hospital were unbelievable.
“Even though we weren’t treated here in Yorkshire, we found out about Candlelighters whilst we were in hospital. Someone from the Candlelighters team called me and it was immediately just so nice to speak to someone who understood. There was no ‘I’m so sorry’, no ‘silver linings’ and no promises things were going to be fine. One of the first things they asked was ‘how is Harvey’s brother Harry?’, which meant everything to us.
“Brother Harry was the focus of a lot of what we spoke about with Candlelighters. He got left out of so much, because the attention had to be on Harvey. We made such a conscious effort and our families were amazing, but it was really difficult.
“It was even more confusing for Harry, because we had separated not too long before the diagnosis, so he struggled to understand why Mummy and Daddy were both taking Harvey to all these places and not him.”
Jill concludes: “What we’ve been through has been physically and emotionally draining. Having Candlelighters to talk all of this through with, and get their experience and advice, made a real difference.”
Jill and Ben are passionate about raising funds, and awareness, for retinoblastoma.
To find out more about the work Candlelighters does and to support their work, visit their website at www.candlelighters.org.uk