Duchenne patient, Michael, 9, to be given breakthrough drug

The family of a young boy with a rare medical condition are celebrating a campaign victory after a letter from Nicola Sturgeon confirmed he will benefit from a breakthrough drug not previously available in Scotland.

Michael Young, nine, and his family met Nicola Sturgeon in June after the Scottish Medicines Consortium (SMC) refused to approve Translarna to treat the muscle-wasting condition Duchenne muscular dystrophy.

The SMC said in April there was too much uncertainty about the overall benefits in 0 Michael Young received huge support in a petition relation to its cost. The family organised an online petition calling for a rethink of the decision which received the backing of more than 150,000 people.

A personal letter from Ms Sturgeon confirmed Michael and five other boys eligible for the drug will receive it through the individual patient treatment request agreement.

Most boys with Duchenne will be in wheelchairs by their 12th birthday and few live beyond their late 20s, the charity Muscular Dystrophy UK said.

It is hoped Translarna could keep eligible boys walking for longer while also maintaining the prospect of accessing potential treatments of the future.

Michael’s mother Michelle said: “To have our boy rewarded for all his campaigning was just amazing.”