THE family of a young Prestonpans boy with a debilitating condition have joined other parents to call for a new drug to be made available to children in need.

Four-year-old Cormac Fegan, who has Duchenne Muscular Dystrophy, and his mum Ella helped lobby Westminster for funding for the drug, Translarna, to be made immediately available.

They joined other families to hand over a petition to Downing Street last week, accompanied by East Lothian MP Fiona O’Donnell.

Mum Ella said: “We were told last February that our little boy Cormac had Duchenne Muscular Dystrophy after what we thought would be a fairly routine paediatrician appointment.

“This devastating condition causes the muscles in the body to weaken, starting in the limbs before working its way to the muscles that support breathing and the heart. It is 100 per cent fatal and there is no cure.

“As parents, words cannot adequately express how totally heart-breaking this news is. But there is hope. Medical research is advancing fast and the first ever drug that treats Duchenne, Translarna, has been licensed in the EU for boys over five who are still able to walk.

“Cormac is one of about 200 boys in the UK with the specific genetic mutation this drug targets and still able to walk. We know from another parent that his son was able to run up stairs after taking part in the clinical trials, something he had never been able to do.   “The next step is securing funding from the NHS so that we can get Translarna for all boys who could benefit. Budgets are tight and funding cannot be assumed. We went to Westminster on Wednesday with Cormac to meet Fiona, make our voices heard and hand in a petition signed by nearly 25,000 people to support the funding of this drug by the NHS.

“Every day, week and month this funding is delayed eats into the time before Cormac and other boys are no longer able to walk. We want our son to be able to play with his friends and run after his little brother as long as possible and we will continue to fight for this.”