THE family of a 12-year-old girl who has one of the rarest forms of Muscular Dystrophy have raised thousands to help find a possible cure.
Nicola Johnston was diagnosed with a congenital form of the muscle wasting condition before her 2nd birthday.
Very little is known about ISPD Congenital Muscular Dystrophy, which Nicola suffers from, so there is no treatment available and doctors don’t know what the future holds for her.
Mum Diane was pregnant with her son Fraser, 10, when she found out Nicola had MD and had to deal with the agony of knowing there was a one in four chance he would have it too.
However, both Fraser and Diane’s youngest son Ross, 5, were clear.
Three years ago Nicola, who is from Giffnock, received an operation to help straighten her feet and ankles in order for her to be able to wear shoes.
Diane and her husband David have raised more than £12,000 in a year to fund research into the condition.
Muscular dystrophy is an incurable genetic condition marked by progressive weakening of the muscles
Around 6,000 people suffer from the condition in Scotland and there are around 60 different types.
Diane said: “When Nicola was 18 months, we noticed she wasn’t doing the the things that she should be, like crawling and rolling over.
“I was pregnant with my son, Fraser at the time. It was about three years later when we found out she had MD.
“Both David (Nicola’s father) and myself were numb and heartbroken as all the dreams that you have for your little girl just go out the window, and you start think what kind of future does she have?
“There was a one in four chance my sons could have had it too.
“They said it was hereditary but there’s nothing in the family. David and I have the gene.
“They don’t know much about it.
“She’s been in a wheelchair since before her third birthday.
“They don’t know life expectancy, which my husband and I think is quite positive.
“No one knows what’s going to happen to any of us.
“She has her moments but she doesn’t let it get to her.
“She’s doing really well in school, she got an A for her last maths exam and she’s got a good bunch of friends.”
Diane was joined by former Rangers player Gordon Smith at an event to promote the charity, Muscular Dystrophy UK, of which he is patron.
He said: “I’m involved with quite a few charities but this is a tough one.
“I find it so sad. It’s marvellous what these parents are doing.”
Muscular Dystrophy UK will host its annual Question of Support Dinner & Quiz evening at the Hilton Grosvenor Hotel in Glasgow on Friday May, 19 with prizes donated by Rangers and Celtic.
For tickets go to www.musculardystrophyuk.org/events/question-of-support-dinner-quiz/