‘Superstar’ inspired by Captain Sir Tom smashes his own charity target
DETERMINED: Thomas Riley
An 11-year-old “superstar” battling a rare medical condition has smashed his own charity fundraising target after being inspired by the late Captain Sir Tom Moore.
Thomas Riley, from Kingswood, suffers from Friedreich’s ataxia, a neurological condition which disrupts the messages sent from the brain to the muscles. The progressive condition makes communicating and moving a daily challenge for Thomas.
Only around 500 children in the UK have ataxia and there is currently no known cure.
Thomas was recently inspired by the amazing achievements of Captain Sir Tom, who became a national hero after raising more than £30m for the NHS by walking laps of his garden at the age 99, to embark on his own challenge.
He set himself a target of raising £500 for Ataxia UK by walking one mile every day in February.
To date, he has raised £4,563 – and he’s still going.
Thomas’ mum, Lucy Riley, said: “We’re so proud of him. Despite the challenges he faces each and every day, he approaches everything with a smile.
“Even on the tough days, he still pushes through to achieve his goal and he’s so grateful to everyone for supporting him.”
Thomas, a pupil at St Mary’s College, set himself the challenge when he overheard his mum and dad, James, talking about Captain Sir Tom.
“We were discussing how amazing it was that he’d challenged himself to do something he found so difficult to raise money for a cause he believed in,” said Lucy.
“This then led to a conversation about Thomas and he said he felt he could challenge himself too – to raise money for Ataxia UK.”
James himself has completed over a dozen running events, including a marathon around the family garden, to raise thousands of pounds for the charity.
Other family members and friends have taken on their own challenges and, despite his personal struggles, Thomas decided he wanted to tackle his own.
Lucy, 36, said: “Life can be really hard for Thomas. Due to the nature of his condition, his mobility is gradually decreasing, and will continue to do so.
“His dream has always been to play for Chelsea, so it’s a hard pill to swallow.
“What’s incredible about him though, is that he’s so positive. When he’s had a bad day, he picks himself up and carries on.
“As a family, we’re determined he won’t be defined by this condition, which is why we’re so proud of him taking on – and smashing – this challenge.”
Thomas also has a secondary heart condition, called hypertrophic cardiomyopathy, which is common among sufferers of Friedreich’s ataxia.
“Some days are harder than others,” said Lucy.
“Even a five-minute play in the garden now will leave him needing a rest.
“It’s not an exaggeration to say that a mile to Thomas is probably the equivalent of a marathon.
“He doesn’t let that stop him though – he’s out there come rain, shine, snow or ice.
“We couldn’t be any more proud of him.”
Thomas’ grandma, Margaret Riley, 69, said: “Even when he had a fall, it didn’t stop this superstar getting out there again.
“Thomas doesn’t give in to anything.”
Ataxia UK funds research into treatments and potential cures, and supports those affected by the condition through its helpline, advice and information, branches and support groups across the country.
Sue Millman, CEO of Ataxia UK said: "We are delighted to see Thomas' courage and motivation in aid of raising funds to support others in the ataxia community.
“His support and enthusiasm, and that of all our fundraisers, is vital in enabling Ataxia UK to support the thousands of people affected by ataxia."
To support Thomas, visit his fundraising page at: www.JustGiving.com/fundraising/28milesin28days