THE dad of a five-year-old boy who suffers from a rare condition “broke down in tears” after it was confirmed his son would continue to receive a life-changing drug.

Last month, the Scottish Medicines Consortium (SMC) confirmed it would not approve NHS funding for Translarna, the first therapy available to treat an underlying cause of Duchenne Muscular Dystrophy (DMD).

The life-shortening condition causes muscle degeneration and affects just one in 3,600 boys.

Gary Fegan, from Longniddry, previously told the Courier he was “absolutely devastated” by the decision.

Five-year-old Cormac was temporarily receiving the drug following an individual funding request.

Now, it has been announced that he will continue to receive the drug – for another six months at least.

Gary said: “After five months on Translarna, Cormac undertook a physical assessment called the North Star assessment and a six-minute walk test.

“Cormac’s score improved by four in the North Star and the distance covered in six minutes increased from 375m to 600m.

“Based on these figures and the letter from NHS Lothian, we were confident that his funding would be extended.

“Then after the SMC decision and news that another health board in Scotland had refused to fund the drug through an individual funding request, we got extremely anxious.

“The month before, the approval was taking a real strain on Ella and I – each day we’d watch as the sachets of Translarna ran down like a depressing advent calendar.

“It wasn’t until I received the news about Cormac’s re-approval and broke down in tears that I actually realised what a strain this had been on the family.”

The decision will again be reviewed in six months’ time, when the family, from Longniddry’s King’s Grove, will again have to wait to find out if they will receive the drug for a further six months.

Gary has been doing his bit to raise awareness of the condition and earlier this year ran more than 400 miles throughout February.

Cormac was originally diagnosed with DMD in February 2014.

Gary highlighted the progress his son was making.

He said: “Cormac is much stronger and physically able since taking Translarna.

“He is slower to tire and he no longer complains of being slower than the other children at school.

“It’s not a miracle drug by any means – only recently we were brought to tears again at a birthday party when everyone was asked to hop and Cormac turned to us and said ‘but I can’t hop’.

“These moments catch you off guard and bring it all flooding back.

“We as a family are extremely happy Cormac has access to this drug but we’re equally upset that other families in Scotland don’t. We wish that everyone eligible had access to Translarna and we didn’t have to go cap in hand every six months to beg for this drug.

"I know in five months’ time, unless the circumstances change, we’ll need to go through this whole rollercoaster again and I’m already dreading it.”