A BOY from East Lothian has become the first child in the UK with a rare and deadly muscle-wasting disease to receive NHS funding for a breakthrough therapy.

Cormac Fegan will begin receiving the drug Translarna for the condition Duchenne muscular dystrophy after he reaches his fifth birthday in November.

The treatment is the first available in the EU for the underlying cause of the life-limiting muscle-wasting condition, and could keep Cormac walking and out of a wheelchair for longer.

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Health professionals confirmed to Cormac's parents they would gain access to the drug following the approval of an Individual Funding Request by NHS Lothian.

Translarna has been available in several European countries since it was approved by the EU in August last year but there has been concern over its availability in the UK.

Gary Fegan, Cormac’s father, said: “This is really exciting for us - we feel very lucky that the timings have worked out, as Cormac is about to have his fifth birthday, the age when you can start taking Translarna.

"We've heard all the horror stories from people in other parts of the UK, so we were prepared to have a fight on our hands.

"We felt a huge sense of relief when we received the news."

He added: "This gives us hope for the future and when new and innovative drugs come through in Scotland, Cormac should be eligible."

Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said the move was "a true landmark moment".

"It is the first time a therapy addressing a genetic cause of Duchenne muscular dystrophy will be funded by the NHS.

"We hope that Cormac’s case will be used as a benchmark for all the families in Scotland, and indeed the rest of the UK.

“Duchenne is a life-limiting condition, and we must protect children and their quality of life.

"The opportunity to be able to walk for longer can be immeasurably precious.

"We may not yet be able to halt the difficult challenges these children face, but with this drug, we have the chance to delay them."

Mr Meadowcroft claimed families of 50 children in England eligible for Translarna had been dealt a bitter blow when funders south of the Border declined to pay for the drug treatment there.

Courses vary but it has been reported the treatment can cost up to £250,000 a year.

Muscular Dystrophy UK said parents will now have to wait for a decision from the National Institute for Health and Care Excellence (Nice), which recommends which drugs can be prescribed south of the border and is expected to release its draft guidance for England within weeks.

Mr Meadowcroft said: "We are delighted for Cormac and his family, and urge other NHS boards to follow Lothian’s lead.

"However, we remain gravely disappointed that the agonising wait for children in other parts of the UK continues.

"Nice must act now to ensure Translarna is not only accessible in Scotland, but that this drug reaches all those who need it, wherever they live.”

Duchenne muscular dystrophy causes muscles to weaken and waste, causing increasingly severe disability.

Most of the 100 children born in the UK with the condition each year are full-time wheelchair-users by the age of 12, and are at risk from life threatening heart and breathing problems from their teenage years.

Few currently live to see the age of 30.