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.
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:
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.
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.
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.
Matthew Barrett has Duchenne Muscular Dystrophy and is calling on the government to do more to help find a cure.
Campaigners say as well as funding further reseach, the government should set up a network of centres of excellence, including one in the south west.