A toddler was diagnosed with a rare eye cancer after his parents spotted an unusual white glow in his left eye. This distinct symptom was only noticeable in low-light conditions, or when his taking photo with the flash on.
Shane Stevenson, 35, and his partner, Lowri Gallagher, 30, from Rhonda Valley in Wales, were at home when they noticed a white glow in their then one-year-old son, Kooper’s eye. At first they thought nothing of it but after they “kept seeing” it they started to worry.
Advice on Google told them to take a flash photo of Kooper, which meant the glow was even more obvious. Shane recalled: “I dismissed it at first and then noticed it myself a couple of days later – then kept seeing it.
“We Googled it and came across some advice that said to take a photo with the flash on, and the white glow in his eye was obvious then.” Shane said the weekend was “full of panic” and he was constantly looking online for advice.
After a visit to the doctor, Kooper was transferred to Royal Glamorgan Hospital for an ultrasound, which showed that Kooper had a lump in his eye. “The doctor referred us to the local hospital a couple of days later,” Shane said.
“It was another scary time, not knowing what was wrong. We’d read that there could be a few other reasons for the obscured red reflex in his eye, so we tried to hold onto hope for a different diagnosis.
“After an ultrasound, they told us he had a lump in his eye and that ‘it could be serious, or it could be not as serious’, which wasn’t overly helpful.”
In December 2024, Kooper was diagnosed with retinoblastoma, a cancer that rapidly develops from the immature cells of the retina, the light-detecting tissue of the eye. It is most common in children under the age of three years.
Shane said: “It is hard to describe my feeling in that moment, it was heartbreaking to hear that your song had cancer. There was so much going through my head about whether or not he would need to get his eye taken out.”
Doctors told Shane that Kooper would need chemotherapy, and if the tumour doesn’t shrink he may need an operation to remove his eye. Health and safety consultant Shane said: “I don’t think anything prepares you to hear that your one-year-old has cancer, may lose his eye, or may never see out of it again – it was a very emotional time.”
Since December, Kooper has undergone intra-arterial chemotherapy, before having laser therapy and one round of chemotherapy injections. “Kooper has had four rounds of intra-arterial chemotherapy, laser therapy twice, and one round of chemotherapy injections,” Shane said.
“Results have been mixed; the first two intra-arterial rounds were somewhat effective, the third was very effective, but the fourth had little impact. They said at his last examination that the tumour looks smaller, but the spores in his eye are growing, so hopefully the injection has had a positive effect on that.”
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Living with the effects of the treatment has been difficult. Shane, who is also dad to Brody, aged three, continued: “After treatment, when he is on steroids, Kooper becomes very distressed for four to five days, which has been difficult.
“My partner and I both work, and we can’t send him to nursery when he’s like that, but he does like going on trips to the hospital.” During the ordeal, Kooper’s family has been supported by The Childhood Eye Cancer Trust (CHECT).
Shane added: “CHECT have been great, we had the initial grant which helped with travel costs etc. Our support worker has been to see us every time we’ve been to the hospital, which probably has had the biggest impact, having an impartial point of contact to speak to and get information from, she always engaged with us and with Kooper.
“She also helped us with the Disability Living Allowance forms and also signposted us to different services.” In April, Shane ran the ABP Newport 10K to raise money for CHECT and is set to take on the Chepstow 10K in August for the same reason.
Retinoblastoma symptoms
According to the NHS, retinoblastoma can affect one or both eyes. The health body explains that the main symptom is a white glow or white reflection in the centre of the eye (pupil).
“You may be able to see it from just looking at the eye, or you may see it in low light or in photos where a flash has been used,” it says. Other symptoms of retinoblastoma can include:
- The eyes pointing in a different direction (squint)
- The coloured part of the eye (iris) changing colour
- Swelling around the eye
- Uncontrolled eye movements
- Vision problems
- Pain in one or both eyes.
Your child may otherwise seem well.
