Live updates

Desperate families must keep waiting for drug that could save their children

Leo Le Gal's family say Translarna has slowed down the devastating symptoms of his illness. Credit: ITV News

Families desperate for the NHS to approve a drug that could change their children's lives have just found out they have to keep waiting.

The decision on whether to fund Translarna, which could be life-changing for children with muscular dystrophy, was expected to be this afternoon.

The mother of a boy from Devon who has the devastating muscle-wasting condition Duchenne Muscular Dystrophy has been fighting for the NHS to approve the drug, which is widely available in Europe.

Ruth Le Gal's son Leo is being treated with Translarna in America, and his family say they have seen huge improvements in the last few months - but they are desperate for the drug to be approved here as he is only being treated as part of a trial.

A decision won't now be made until NICE concludes its appraisal process.

"Children deteriorate very quickly who have got this illness and this medication can stop this illness, can keep them stable and keep them healthy."

– Ruth Le Gal, Leo's mother

Devon Mother calls for life changing drug to be made available on the NHS

Ruth and her son Leo - who suffers from muscular dystophy Credit: ITV News

A mother from Devon is calling for a potentially life changing muscular dystrophy drug to be made available on the NHS.

Ruth Le Gal's son Leo suffers from the conditon and today she joined a group of campaigners at Westminster who say the drug is taking too long to be approved.

Today at PMQ's David Cameron said a decision would be made in the near:

Advertisement

PM receives petition calling for ground breaking drug to be more widely available

The Prime Minister accepts the petition calling for Translana to be made more widely available. Credit: ITV News West Country

The Prime Minister has personally intervened in a campaign by a family from Devon to make a ground breaking drug more widely available.

The parents of Leo Le Gal, from Ivybridge, say it has slowed the onset of his muscle-wasting condition, Duchenne Muscular Dystrophy. But Leo is only getting the drug, Translana, as part of an American trial - it's still not approved here.

Today other parents gathered outside Downing Street calling for Translana to be made available here - and responding to a letter from another nine year old boy, the Prime Minister said he'd look into it.

On his return to Downing Street, Mr Cameron did just that, chatting to the boy and his family, and in a highly unusual move, accepting the petition and posing for pictures himself.

Tonight NHS England said that the drug might be fast tracked - for patients whose doctors say they have an urgent need.

Devon mum's petition for muscular dystrophy drug

Leo Le Gal is being treated with the drug, Translana, in America Credit: ITV News

A mother from Ivybridge in Devon is urging the government to approve a drug that could help treat children with muscular dystrophy.

Ruth Le Gal will meet MPs in Westminster later to hand over a petition. Her son is being treated in America with the drug - and while it's widely approved elsewhere in Europe, the NHS is yet to make it available here.

Children deteriorate very quickly who have got this illness and this medication can stop this illness, can keep them stable and keep them healthy.

– Ruth Le Gal, Leo's mother

Mother calls on NHS to help children with muscular dystrophy

Ruth Le Gal's son has muscular dystrophy. Credit: ITV News

A mother from Devon is urging the NHS to approve a drug that could help treat children with muscular dystrophy.

Ruth Le Gal's son Leo is being treated with Translana in America - and while it is widely approved elsewhere in Europe, the NHS are yet to make it available here.

She says it is vital children get it as soon as possible.

Although the medication isn't designed or intended to restore function that has been lost - so we haven't seen him miraculously leap up and run around - it has stabilised his condition, which is a fantastic thing for us because it means he is no longer getting any worse.

– Ruth Le Gal

Advertisement