Man with genetic disease defies odds in plane jumps and Great Wall climb

HE was told as a youngster that he would be unlikely to live beyond his 25th birthday due to a rare genetic disease.But brave Ian McInnes, now 42, is continuing to defy the odds, thanks to his “sheer bloody-mindedness”.

Despite being confined to a wheelchair, he has refused to let his condition stop him living life to the full, taking part in parachute jumps and even climbing the Great Wall of China.

Such feats would have seemed impossible when, at the age of seven, he was diagnosed with the extremely rare disease, Ataxia Telangiectasia (A-T).

His parents John and Elizabeth first noticed something was wrong when he began to struggle to walk as a toddler.

Baffled doctors first misdiagnosed him with cerebral palsy but it wasn’t until he was seven that he was tested for A-T, which causes abnormal cell death in the brain, affecting coordination and movement.

He attended school in Edinburgh before being moved to the Star Centre, now called the National Star College, in Cheltenham, Gloucestershire, where he learned to be independent.

And he took on his biggest challenge while at the school, when for his gold Duke of Edinburgh award he travelled over the French Alps.

Ian, who still lives independently in the Capital, was speaking about his battle to mark Rare Disease Day next Wednesday, and said: “Everyone thought I would be dead by the time I was 25.

“I like taking risks – you’re not alive if you don’t. I’ve done a lot more than a lot of able-bodied people and the reason I’m still here is because of sheer bloody mindedness.”

As well as the Alps he has travelled to Canada and China, where he travelled along the Great Wall.

“During the trip I used 30 different forms of transport, from planes to piggybacks,” he said. “I was determined to walk along the wall, so two of the people I was with stood on either side of me and helped me take a few steps.

“It’s something I have always wanted to do and I’m happy I did it. Living with a condition like mine can be frustrating but you just have to learn to make the best of things.

“It’s a strange situation for me because they say it is a genetic condition, but no-one else in my family has it.

“When people find out what I have and then the life span I was supposed to have they can’t believe it. I have made a hobby of proving doctors wrong. It’s something I have done since I was born and I don’t intend to stop now.”

Ian, who has completed two 12,000ft parachute jumps and two 10,000ft jumps, regularly whizzes around Edinburgh in his electric wheelchair and is a trustee for the A-T Society, a charity which raises awareness of the condition, which affects one in every 100,000 people.

Sister Iona, 40, a mum-of-three, said: “He’s never complained about his condition, he just gets on with it.”