The countdown to Charlie Dawson’s epic mountain climb has begun. SUE BRADLEY discovers how he’s ready for a fight

BATTLER Charlie Dawson is yet to scale South Wales’ highest peak in his bid to raise a total of £10,500 for a new powered wheelchair, but he already knows what he would like to do with his old one.

The determined 22-year-old is keen to ensure there’s also enough money to refurbish the Trekinetic K2 chair that he’s had since he was 14 so that he can either donate it to an injured serviceman or woman or sell it and donate the proceeds to a charity.

Had life been different, Charlie would have pursued a career in the army: as it is he’s one of just five people in the world with a muscular condition called paroxysmal non kinesogenic choreoathetosis. He also suffers from dystonia ataxia, which is controlled by a neurostimulator implant without which he would endure constant cramps.

The wheelchair currently used by Charlie when he’s tired still works well, but he’s grown out of it and finds it tough on his shoulders to propel it. He often has to rely on his mum Jackie and dad Kevin to help him up steep slopes, something they both find difficult having weakened their backs through lifting him when he was younger.

The chair, made by Trekinetic, was bought in 2009 after Swindon Advertiser readers rallied round to raise money for it.

Jackie, 53, says it’s made a massive difference to her son’s life as it allows him to get around when he’s feeling too tired to walk.

“We looked into having it fitted with a motor but that would cost as much as getting a new one,” she says.

“Charlie wants his wheelchair to continue to make a difference to another person’s life and he would be proud to give it to a serviceman or woman, or we’ll put it up for sale and send the money to a charity of his choice.”

The idea to climb the 886m peak at Pen y Fan came from Charlie himself after he had seen his Honda worker dad going there to train.

Jackie admits the trek to the summit will be tough on her son, but she is confident that his character and determination will take him to the top.

“Charlie has tried out a powered chair and said it was amazing,” she says.

“The one Charlie wants will allow him to switch from powered to manual, so that he can maintain the strength in his shoulders.

“We were talking about how we would raise the money for it and Charlie said ‘I’m not going to have everybody doing something for me; I am going to do something’.

“I thought about walking around Coate Water but he said he wanted to climb Pen Y Fan. It’s going to be difficult but I believe he will do it because of his character and determination.

“We’re going to have a team of people going with him.”

Jackie, who also has a daughter, Chaye, says she knew that life would be tough for Charlie even before he was born.

“I had that feeling, even when he was inside me,” she explains. “Something just didn’t feel right.

“As he developed we noticed he wasn’t sitting up. When he tried to pull himself up he would fall down. He didn’t crawl and instead scooted around on his back: that’s Charlie all over, he will find a way to do things.

“Even though he found things difficult, I used to get him to have a go, and if he still couldn’t do it I’d help him. I’ve never tried to wrap him in cotton wool.”

Specialists at Great Ormond Street Hospital diagnosed what was wrong with Charlie when he was three and a half and his parents were shocked to discover that his muscular condition was so rare it was not even the subject of research.

“Throughout his life, Charlie has been a guinea pig in terms of the treatments he’s received,” says Jackie, who works as a phlebotomist at the Great Western Hospital. “He’s had seven operations on his brain and I’ve always said to him that whatever they want to do to him will possibly help the quality of life of somebody else, so he should never feel fed up.”

Charlie, who lives in Moredon, attended Robert Le Kyng and Commonweal Schools and subsequently went to the National Star College near Cheltenham to study sport. And while his conditions make it impossible to work in a paid job, he volunteers as a boxing coach at the Scrappers community gym and helps at ‘All Inclusive’ classes for disabled people.

“I was determined that he would go to mainstream schools,” says Jackie. “He did his best there and was always into sports, although health and safety rules used to hold him back a lot.

“Scrappers means a lot to Charlie. His life is boxing. His father and grandad were boxers, but he can’t box himself because of his neurostimulator, which was implanted when he was nine to reduce his cramp attacks.”

Jackie says Charlie’s life has always been a fight and that their experience of state support for people with disabilities has been challenging, but adds she’s proud of the way he copes with everything.

“He’s grown up with his conditions; in a way I think it’s harder for people who have been able-bodied and have something happen to them and have to change their way of thinking,” she says.

“Nothing in Charlie’s life has ever been simple. Even mundane things like child seats for the car cost five times as much as normal ones.

“It’s been tough on Chaye, who has had to get used to being pushed to the background.

“As the mother of a disabled person, it’s difficult to spread your time because if Charlie has an attack, I have to deal with it.

“Over the years Chaye and I have tried to do mother and daughter days going shopping or having a meal together, and our family holidays were more for her than Charlie.

“Having this powered chair would mean we could do so much more as a family, such as going out for family bike rides together, Charlie’s bike being his chair.”

The Dawson family has launched a Just Giving page for Charlie which has raised £720 within its first three weeks and attracted the attention of a walking group from the Brecon Beacons, who have offered their support for his Pen Y Fan trek on September 30.

Meanwhile various people have volunteered to take part in challenges of their own to raise money.

Jackie and Kevin’s nephew Ben Nash, girlfriend Sarah Jane Carpenter and friends will be climbing Three Peaks and in September they and Scott Boden will be running the Swindon Half Marathon for him. Matt Glover from Scrappers is going to do two Tough Mudders in one day and running a Smash It For Chaz event, during which people can take part in five different fitness classes for £25. Meanwhile Dave ‘Bam Bam’ Gregory is dedicating a semi-professional fight to Charlie.

Jackie and Kevin say they’re proud of their son’s determination to climb a mountain and hope it will prove an inspiration to others.

“Charlie has had to battle all his life and it’s always been a huge source of strength for us to have so many people supporting him,” says Jackie. “Raising money for a wheelchair will be a challenge but we’re ready for it.”