Blair’s story: Lyon family to deliver match ball on Change the Game night

Scott Lyon has learned to accept the unexpected. When your two-year-old son’s prosthetic eye occasionally falls out, you find a way to carry on.

“It’s amazing how quickly you accept an eye that falls out from time to time,” he says, with the kind of weary humour that only comes from living through something unimaginable.

In December 2024, Blair Lyon – then just 14 months old – was diagnosed with retinoblastoma, a rare eye cancer that affects only 40 to 50 children across the UK each year.

His condition was advanced, with significant tumours in both eyes. For Scott and his wife Olivia, the days that followed were defined by shock, denial, and a creeping dread.

“After the denial and confusion, it was just heartbreak, worry and dread,” Scott recalls. “This couldn’t have been predicted or prevented. We had an explanation to a symptom, but no certainty with what came next.”

What came next was 110 days in hospital and counting. Eight months of chemotherapy. Forty flights for treatment at specialist centres. And in July 2025, when all options for Blair’s left eye had been exhausted, surgery to have it removed.

Through it all, Blair has been remarkable. “He’s a happy, funny, curious, adventurous boy full of life,” says Scott. “It’s sad to see him accept the sight of an anaesthetic theatre with such normality – but that’s his reality right now.”

DONATE TO IT’S GOOD 2 GIVE HERE!

Monthly procedures continue in Birmingham, the UK’s specialist centre for retinoblastoma, while the family manage a daily routine of eye drops, syringes, and the complexities of a prosthetic eye for a child still too young to be fitted for a mould. Blair’s treatment remains active and ongoing.

Last month, Scott and Olivia ran the London Marathon – the centrepiece of a remarkable fundraising campaign that has so far raised over £32,000 for the causes closest to their hearts.

Olivia’s journey, in Scott’s words, took her from couch to marathon finish line, with Blair’s courage as the fuel. “Our motivation was Blair, and children like him,” he says. “Staying on an oncology ward like RHCYP Edinburgh, you’ll never find bravery like it.”

Two charities have been central to that effort. The Childhood Eye Cancer Trust – CHECT – has been a constant companion on the medical journey, providing monthly counsel, reassurance, and, at critical moments, small but meaningful gestures of support.

“They’ve been wonderful advocates for Blair,” Scott says, recalling a stuffed penguin with a removable eye delivered at a particularly difficult point in treatment.

It’s Good 2 Give, meanwhile, have played an equally vital role closer to home – providing experiences and memories that offer moments of joy amid the relentless pace of treatment.

“It’s an understatement to say we are in awe at their generosity, hard work and kindness,” Scott says. “They’ve been a local champion for Blair and a real support to our family. We owe them a lot of thanks.”

Tonight, the Lyon family – Dad Scott, Mum Olivia, and children Isaac (4) and Blair (2) – step onto the Hive Stadium pitch as our match ball deliverers.

For them, it is an honour, an experience they say they will remember for life. But Scott is quick to point out that their story is not unique. “Many supporters in tonight’s crowd will face health or family challenges,” he says. “We can resonate with the daily battles, and hope to show that things can get better.”

If there is one thing Scott wants Edinburgh Rugby fans to take away tonight, it is awareness. Retinoblastoma is rare – Blair was one of just 44 children diagnosed in the UK in 2024 – but it can affect any child from birth. Signs include a squint, or an unusual reflection in the eye.

“It’s not just a battle for life,” Scott says, “but a fight for sight.” For more information, visit the CHECT website or follow Blair’s own journey on Facebook at Blair’s Rb Journey.

Tonight, as Blair carries the match ball under the Hive Stadium lights, perhaps spare him a thought – and a cheer. He’s earned it.