UP TO the age of nine, Dylan McCarthy could walk perfectly. But, in 2010, he had to start relying on a wheelchair as his joints could no longer support him.
Dylan was diagnosed with a severe form of Elhers-Danlos syndrome; the condition causes his joints to dislocate because his body cannot produce collagen. It also affects his organs.
Dylan, 16, is one of about 10 people in the country with such a severe form of the condition but he is adamant that it won’t stop him from living life to the best of his ability.
“He’s actually in the chair fulltime now at this stage because his hips have over-stretched so much,” his mum Sandra said.
“Normally when you dislocate something it’s like an elastic band — it goes back in place after a while — whereas Dylan’s won’t because there’s no connective tissue there.
“It just keeps on stretching and stretching and stretching, so he’s always in pain, but it also affects other organs as well as every joint in his body.”
Neither Dylan nor his family believe that his condition should stop him from doing what he loves. He is a member of Cork’s Rebel Wheelers — a group that aims to give young people with a physical disability the opportunity to participate in sport in a fun, safe environment.
The teenager and fellow club members are representing Ireland in Portugal at the International Wheelchair and Amputee Sports Federation World Games this week.
Speaking in advance of the trip, Dylan said: “I’m going over for the World Games competing in discus and shot put.
“I’ve being doing it (the sports) for about five years, I got into it through the club when they were doing a ‘Try everything day’.”
“I’m representing Ireland and I can’t wait; I’m really looking forward to it.”
His mum Sandra is the group’s events and fundraising manager, and she’s organised for the club’s kids to go karting, horse riding, kayaking and trampolining. Some go karts are controlled by hand, hoists are used for rock climbing and this gives people with different types of disabilities the chance to get involved.
“Anything that is slightly different, and if people are willing to help us we will go down that route and see if we can do it,” she said, “especially with the older kids, they love anything that’s adrenalin (fuelled) they are just as mad as any of the able-bodied kids, they want to do the same things.
“As the kids were getting older, we thought, what are we going to do that can make it more exciting, to thrill them?
“That’s when we came up with different ideas like putting them on the rollercoasters and things. And, then we thought: Why can’t we get the kids to go on the ice, and could we actually put the chairs on the ice and make it a family day?
“I said it to the committee and they laughed a little, probably thinking, “Is she a bit mad?” However, after asking Bill Cremin at Cork On Ice the question, Sandra got the answer she was hoping for.
“Two hours later, they came back to us after checking insurance. etc. and said: ‘Ya, no probs;’ they were so nice!”
For the fourth year running, the group has teamed up with Cork On Ice in Mahon Point to give kids a chance to feel the sensation of gliding on ice.
An average of between 40 and 50 manual wheelchairs can go on the ice at any one time.
“It’s a real family day and it’s something that we can all do together,” Sandra said.
Each year the club’s members take to the ice-rink in their chairs and with the help of the local ice-hockey team the kids are whizzed along; Dylan loves it.
“I thought it was unbelievable the way we got to do it and the way it worked,” he said.
“I never thought I’d be able to do it, being in the chair you wouldn’t think you’d ever be able to do it, but it was unreal when we got on to it. It was a different feeling and sensation to be pushed on the ice .” As Sandra watched on, she said her heart was in her mouth.
“It’s just unbelievable — to see any child smile, any child that thinks they might never be able to do it, actually do it, I mean, that’s worth a million.”
Rebel Wheelers started in 2008; the club encourages its members to show off their abilities, rather than focus on their disabilities. Dylan joined in 2010 and took part in a summer camp with nine other kids; he was able to walk at the time but gradually he could no longer stand unaided.
Initially, it was hard for Dylan to go from being a standing athlete to a seated one and to overcome the challenges — both mental and physical — but with gentle encouragement he pursued.
Sandra said: “When you have a child who has a disability, or when they are diagnosed with something, it is like the end of the world. You think to yourself: “What did I do wrong? Did something happen? And you kind of blame yourself.
“Then you kind of sit back and think to yourself: ‘I can’t wrap him up in cotton wool, what the hell am I doing, like?’
“If I keep him in bubble wrap, sure, he’ll have no future, he’ll have no outgoings in life, he won’t be able to fit in, his confidence was wrecked as it was!”
Sandra says Rebel Wheelers have been a “life-saver” for Dylan, especially when he was first diagnosed. The club provided invaluable support to Dylan, Sandra, her husband Michael and sister Sarah and helped them see Dylan’s future in a positive light.
“We thought: ‘You can still use your arms, shoulders, you can still do athletics, but instead of a standing athlete like you were, you’ll have to sit on a special frame and go as a seated athlete... so it’s not the end of the world’.”
Dylan never imagined he could compete in what he describes as “such an elite competition”, never mind winning silver at the International Wheelchair and Amputee Sports Federation World Games on two separate occasions.
“Now, he’s on the wheelchair basketball team — both juniors and seniors, he’s now one of the elite senior athletes who’s going to the World Games,” Sandra said.
“He is confident, he’s out with his friends, he goes camping with friends — I was thinking: ‘how is he going to manage that?’ But, he’s learned that he can manage and that you just have to do things a different way.
“That’s all we ever try to do in the club with the kids; to tell them that they can achieve what they want to achieve — they might have to do it slightly differently, but they can achieve if they put their mind to it.
“There’s always ways, and you have to encourage them and show them that life isn’t over; you have to get out there!”