The family of a ten-year-old boy from Chalfont St.Peter said they won’t give up their pursuit of access to a new life-changing drug, despite news that their wait will go on.

Archie Hill has been living with Duchenne muscular dystrophy, a rare life-limiting condition causing muscle weakness, since he was three and a half years old.

On Friday he had hoped to hear that a new drug – Translarna – which is believed to delay the effects of the condition, would be approved for use on the NHS.

But the National Institute for Health and Care Excellence (NICE) has delayed the decision and stated it is currently “minded not to approve” the drug which David Cameron said would cost around £400,000 per child.

Louisa Hill, Archie’s mum, said: “We are absolutely devastated.

“How do we tell Archie he is not allowed a drug that will keep him walking and living for longer because NHS England and drug companies cannot agree on a price?

“We need to put pressure on NICE, NHS England, and the pharmaceutical companies. What sort of an example are these people setting for society if they are prioritising cost over the health of our children?

“It has been approved in Scotland – I just cannot understand why we are not following suit.

“We will not be giving up, we are a tough family. This fight is far from over.

“We have had amazing support. I have to say a massive thanks to Cheryl Gillan and Muscular Dystrophy UK. They’ve been brilliant.”

Archie is one of about 2,500 youngsters in Britain who suffer from the condition, for which there is currently no known cure.

He met David Cameron in January this year to hand over a petition calling for an end to delays in making the drug available.

Prof Carole Longson, director at NICE, said: “The Committee was not convinced that the proposed cost of ataluren was justified by the evidence presented on the additional health benefits.”

Cheryl Gillan, MP for Chesham and Amersham, lobbied the Prime Minister last week on behalf of Archie and described Friday’s outcome as a “body blow”.

Mrs Gillan said: “This is like a peculiar form of cruelty. There should be no price on a child’s happiness.

“This decision is between NICE and the pharmaceutical company and I hope they can come to an agreement.

“This drug has been made available in Scotland and my constituent deserves the same chance.”

Children must be able to walk to be eligible for the drug, and there are fears many will miss out entirely through losing this ability before NHS England makes the drug available.

Robert Meadowcroft, Chief Executive of Muscular Dystrophy UK, responds: “Today’s news is extremely disappointing.

“Many parents across the rest of the UK are watching their child weaken and lose mobility day by day.

“This really is a race against time. If we are not careful, it will be too late.”

NICE has asked PTC Therapeutics, who manufacture Translarna, to provide further information to explain the costs of the treatment and their Evaluation Committee will meet again November 17.

A recommendation is expected to be finalised and signed off in February 2016.