A YOUNG woman whose brother died of an incurable muscle wasting disease has vowed to make him proud by finishing a book he was writing about living with the condition.
When avid Burnley FC fan Ashley Kirkham, 27, died of Duchenne’s muscular dystrophy, a condition which affects one in 3,500 boys in the UK, he was in the process of writing a book about how it
affects sufferers and their families.
Now his sister Maggy Simpson, 24, who had been helping him write the book, is to complete it and hopes to have it published.
Muscular dystrophy affects the proximal muscles, which are those near the trunk of the body, around the hips and the shoulders.
This means that fine movements, such as those using the hands and fingers, are less affected than movements like walking.
Ashley, who grew up on the Stoops and Griffin estates in Burnley, was diagnosed when he was a child and doctors did not expect him to live beyond his late teens.
He was not able to walk until he was four, and by the age of 12 he relied on a wheelchair after the disease, which first causes leg muscles to weaken, led to mobility problems.
Maggy, who lives in the Rosegrove area, said: “When Ashley was alive he wanted to write a book because when we were younger we were never given any information about what was going to happen.
"Ashley wanted to raise awareness and money to help find a cure.
“It will be his story but with my perspective as well.”
Former Ivy Bank High pupil Maggy, who works as a carer for people with learning difficulties, said she had found the process cathartic.
She said: “I wasn’t dealing with Ashley’s death very well, but this seems to be helping.
"I’m hoping to finish it in time for Ashley’s birthday in June.”