A WOMAN haunted by her brother’s battle with a debilitating incurable disease is running a marathon in his memory and hopes to increase awareness of the condition.
Andrea Smith, 42, of Tuckton, lost her younger brother, James Carswell, to muscular dystrophy in 2000, when he was 15 years old.
She recounted how his concerned mother had taken him to a doctor as a toddler, but the GP insisted nothing was wrong.
However, when he started school, teachers noticed he tended to tip-toe to avoid the pain of walking on the flats of his feet.
Andrea, now a children’s nurse, said she can vividly recall their mother at the time of the diagnosis, and how devastated it left her.
“She has been grieving for him ever since that day,” she added.
“Few people know a great deal about muscular dystrophy and the different types that exist.”
James had the most severe form of the disease, Duchenne muscular dystrophy, which progressed rapidly, condemning him to a wheelchair, respiratory failure and ultimately, to his death.
“I had hopes for him. I wanted him to have a career, a wife, children,” said Andrea.
More recently Andrea has learned that two friends of hers have been given the news that their children also have muscular dystrophy and, like in her family, there was no genetic history.
This has inspired her to run the London marathon to raise money for more research, boost awareness about the different variants of the condition and address the misconception amongst some that it only affects males.
Andrea said training has been tough but that whenever she is having a particularly bad day, she reminds herself of James.
“He never ever complained.
“He was always more concerned about mum than himself.
“He was so brave,” she added.
To sponsor Andrea, visit www.justgiving.com/Andrea-Smith10