Our son had his eye removed after retinoblastoma diagnosis
It all started over a few months in 2023 when Wilfie's parents noticed his left eye started to lose focus and "wander" at times."I knew immediately something really wasn't right," recalled mum Carys.When she took Wilfie for an eye examination in south Wales, she said "the optician went really quiet".Wilfie, who is a twin, was rushed to an appointment at the Royal Gwent Hospital in Newport where Carys was told it was highly likely her son had a rare form of eye cancer called retinoblastoma, which affects about 40 to 50 children in the UK every year.A squint is just one possible symptom, with a white glow in the eye, a red swollen eye or a change in the colour of the iris other possible signs, according to the Childhood Eye Cancer Trust (CHECT).
Within 10 days, specialists at Birmingham Children's Hospital confirmed Wilfie had advanced stage five cancer.Richard and Carys took the "very difficult" decision to remove the whole of Wilfie's eye, a process known as enucleation."They couldn't give us any hard evidence that keeping his eye was of any benefit and it carried more risk that the tumour was living on with him for longer and longer," said Richard.He recalled how doctors told them his son's vision would never improve and any attempt with chemotherapy to shrink the tumour would be to save the eye for cosmetic purposes only.
"I still wrestle with it now, the idea that one day he might say to us 'why didn't you try and save my eye?'" admitted Carys.Both believe their son's overall health was the most important factor and felt "grateful" there was a choice to be made.In December 2023, Wilfie underwent surgery and returned home to Caerleon near Newport with his new "magic" artificial eye, overwhelming his parents with his ability to adapt and returning to school after Christmas."He was so resilient and so brave and he came home and he was just like normal Wilfie, just getting on with things," said Carys.Richard and Carys believe their son's young age, typical of retinoblastoma cases, made it more difficult to spot the signs and now they want to raise awareness to help other families.
"Until your child is telling you they can't see the letters on the blackboard, you wouldn't necessarily think of taking them for an eye test," added Carys."But you should take your child to have an eye test, just like they have hearing tests and weight checks in school."Now 18 months on, Carys plans to run this month's London Marathon to raise money for Childhood Eye Cancer Trust, a charity which has helped during the most difficult period of their lives."I wanted to honour Wilfie's strength and bravery," said Carys who will be cheered on in London by husband Richard and her four children."I wanted to do something positive out of something that was so negative and so horrendous for us as a family."
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