David’s walking with a purpose for muscular dystrophy charity

A LOCAL man who has lived with a rare form of muscular dystrophy called congenital myopathy all his life, will take to the roads at the end of the month on a 23 mile walk for charity.

David Devenney, a clinical research nurse from Strabane, will take part in Kiltwalk in Glasgow in April 30 in order to raise awareness for Muscular Dystrophy UK (MDUK).

Congenital myopathy is a muscle weakness disease which affects only around 1,000 people across the UK. It is caused by the coming together of two mutated genes, one called the RYR1.

Speaking to the Chronicle, David said, “I was born in Altnagelvin in 1988 and the doctors figured out straightaway that something wasn’t 100 per-cent right with me.

“At the time, the doctors were baffled; it was the 1980s and we didn’t have the same advances and information around genetics that we do now.

“I was quite a floppy baby, not moving or feeding properly which really worried my parents. Although they didn’t actually know what was going on, the doctors assured my parents to ‘give it time, he’ll begin developing.’

“But I would fall over a lot as a child and I was extremely thin; even now I’m not the most muscular of guys.’

David endured many tests and hospital stays as a youngster, including a gruelling three months in intensive care at the Belfast Children’s Hospital.

David says his mum, due to not having a car at the time, had to rely on daily lifts to and from the hospital in order to be with her son.

David’s condition is, thankfully, a mild version of muscular dystrophy whereas other strains of the disease could have landed him in a wheelchair or partially blind.

Luckily, he has been able to live a ‘fairly normal’ life.

“I know that I have been extremely lucky with this strain of muscular dystrophy. It stems from my dad having the RYR1 gene and my mum also having a mutated gene. I also found out that my dad’s side and all carriers of the RYR1. Coupled, those genes have caused the congenital myopathy.”

A father of two girls, David admits that he, partner Kirsty and his parents feared that their two daughters, one only a few months old, would carry the gene condition.

“It was always a fear I have to admit. But the girls are fine, symptoms have not presented themselves. They may carry one of the genes which can cause issues; however, they would have to meet someone else with a similar gene for any problems to arise and thankfully, due to so few people having the disease, that’s extremely rare.”

Doing the walk with his friend Leanne, David has been training well and is confident he’ll complete the journey, concluding, “It’ll be difficult no doubt but I’m looking forward to the walk.

“ If I didn’t believe I could do it, there’s no way I would have committed.”

To support David and Leanne in raising funds for MDUK, visit www.justgiving.com/team/davidandleanneryr1.