World Retinoblastoma Awareness Week takes place every May, and at Candlelighters, we’re proud to be raising awareness of this childhood eye cancer.
Retinoblastoma typically affects children under the age of six and, while it’s rare, around one child a week in the UK is diagnosed with the condition. Early diagnosis is key – retinoblastoma has one of the highest survival rates among childhood cancers, and spotting the signs early can make all the difference.
This May, we’re supporting Retinoblastoma Awareness Week by helping to raise awareness of what to look out for. The signs aren’t always obvious, and in many cases can be mistaken for something minor – which is why we want parents and carers to feel confident in getting things checked.
Here are some of the key signs to look for:
- White glow or reflection in the eye – You might notice a white glow in your child’s eye in certain lighting, or a white flash in photos where the flash has been used. This is sometimes called a “cat’s eye” or white pupil and can be a sign that something isn’t quite right.
- No red eye in photos – In flash photos, one eye may show a red reflection (which is normal), while the other looks black or dull. This can also indicate an issue with the retina.
- Squint – If your child’s eyes don’t appear to look in the same direction or they’ve developed a squint, it could be worth checking – even though in many cases, squints are harmless.
- Change in iris colour – One eye may look a different colour to the other, or there may be a patch of discolouration in the iris.
- Vision problems – Your child may struggle to focus or track objects, or their vision may seem poor compared to other children of a similar age.
- Red, sore, or swollen eye – If your child’s eye becomes very red or swollen with no clear cause or infection, and especially if this happens alongside other symptoms, it’s worth getting checked quickly.
All of these signs can be caused by things other than cancer – and most of the time, they are. But we also know that with retinoblastoma, time matters. That’s why we encourage parents to seek an in-person eye check from a GP or optician – phone or video appointments aren’t enough, as eye exams need to be done face to face.
We spoke to Jill and Ben, parents to Harvey, who was diagnosed with retinoblastoma when he was two.
Jill says: “It was August 2022 when we got the diagnosis. Harvey 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. 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. Having Candlelighters to talk all of our journey, and get their experience and advice, made a real difference.”
Jill and Ben are passionate about raising funds, and awareness, for retinoblastoma, and are joining us in spreading the word, so that more children can get diagnosed early and treated quickly.
“There were such a lack of awareness about signs and symptoms in our experience. The health visitor, school, GP receptionist… nobody knew what to look out for and if we can change that for just one family, we’ll be happy!”
