Saffron Walden teenager defies rare neurological disease by taking part in 10 triathlons
A determined teenager from Saffron Walden is defying a rare, inherited neurological disease by taking part in 10 triathlons this year – and has raised more than £3,000 for a charity which is helping him and his family through it.
Charlie Stanton-Stock, a pupil at Saffron Walden County High School, was diagnosed with Charcot-Marie-Tooth (CMT) just over a year ago after his mum Tabitha first noticed a gait in his walk.
The sporty 14-year-old gave up rugby in case of injury but took up triathlons – and has found competing has made him stronger.
Currently incurable and steadily progressive, CMT affects people in different ways but it can cause muscle weakness in the lower legs and hands, leading to problems like hammer toes, restricted mobility, uncontrollable pain and carrying out tasks needing fine motor skills, such as fastening shoe laces. However, people with CMT have a reasonable quality of life with normal life expectancy.
“I have to lift my knees up quite a lot which is quite a bit of effort not to fall over,” he said. “When my hands are really cold I freeze up and I can’t move them.
“It was quite a shock when I learnt that in 10 years I might be in a wheelchair. It’s now inspired me to do what I can while I can still walk and run and do things that normal people can do while I still can. I’m going to keep going.”
As well as the 10 triathlons, Charlie has taken part in two open water swims, two triathlons in two days and two triathlons in one day and one sea swim triathlon and has raised more than £3,000 for charity CMT UK.
He has even been invited to a GB para-tri talent event at Loughborough University. which was set to take place at the weekend.
“I just want to help raise money towards research into the disease so that other people don’t have to go through what I’m going through,” he said. “Hopefully they can find a cure or a way to take the punch out of it a bit more.”
CMT UK, set up in 1987 to help those with the condition. is aware of 3,000 people with the condition. Ex
perts believe there is an estimated 23,000 UK-wide with CMT and the charity is keen find the others so it can offer advice on how to manage the condition as well as support with benefits, jobs and family issues.Charlie’s mum Tabitha, 44, said: “I’m completely proud of him, he’s done so well. I think what we decided when he was first diagnosed, I wanted him to have a go and keep fit. I just said if he can build the muscles to be strong as he can be they will waste more slowly.
“He’s got stronger since he started competing.”
Tabitha, who has two other children, Jack, 13, and Darcy, 8, said the news of Charlie’s CMT came as a big shock.
“I was devastated,” she added. “I think it never really dawns on you that your children are going to suddenly get a degenerative disease where they may not walk in a couple of years time. It takes a couple of months to get your head around it.
“It does affect so many people in different ways. Most people don’t know they’ve got it. It’s supposed to be completely
hereditary but nobody else in the family has had it.”Karen Butcher, CMT UK’s chief operating officer, added: “We want to reach out to people who may not be members of CMT UK and urge them to get in touch. We know what they’re going through and the challenges they face, so we can answer their questions, put them in touch with other people and families with CMT and tell them where they can get help and advice.”
For more information, visit cmt.org.uk or call 0800 652 6316.