Muscular dystrophy drug trialled by boy available on NHS

Luca Fernandes enjoys riding his bike and swimming

A teenager who has muscular dystrophy is looking forward to a brighter future after taking part in a drugs trial.

Luca Fernandes, 13, from Poole, was one of 60 children who took part in a six-year study of Translarna, which aims to slow down the muscle-wasting condition.

Children affected by the disease can lose the ability to walk by their teens but Luca remains able to swim, cycle and do everything his friends can do.

Following the trial, the drug has been approved for use by the NHS.

Duchenne muscular dystrophy (DMD) is a genetic disorder which usually affects boys, resulting in progressive muscle degeneration.

Luca began showing symptoms at 18 months old and was diagnosed when he was four.

His parents, Joanne and Fernando, successfully campaigned for him to receive Translana, also called ataluren, which costs £220,000 a year.

Luca began taking the powdered medication when he was six

Mrs Fernandes said: "We were so keen to try and maintain the ability he had and get him Translana as soon as possible.

"He's still on his feet, he's still able to cycle. He can swim and do everything everyone else can do at school.

"If you saw him, you wouldn't know."

In the UK, about 100 boys are born with DMD each year.

Luca said he was worried about telling his friends about his condition: "I did tell them last year and they took it fine but I was worried they wouldn't see me the same.

"I've already surpassed 12 and I'm still out of a wheelchair which is a giant milestone for me.

"I can't tell if it's working or not but it must be."

Mrs Fernandes added: "He's amazing - he's a normal teenager. We don't know what the future holds at the moment but it's a lot more positive."