A ten-year-old boy who suffers with a rare condition will have to wait even longer to hear if he will be granted access to a potentially life-altering drug after a government body confirmed an announcement on their decision had been delayed.

Chalfont St Peter resident 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.

A recommendation announcement about approval for funding the use Translarna – a drug believed to slow the condition’s effect - on the NHS was expected from the National Institute for Health and Care Excellence (NICE) early last week.

However NICE stated that PTC Therapeutics – a company involved providing details of the drug’s use – had submitted further information over the Christmas period which needed to be assessed by their evaluation committee, causing a further delay.

In October last year NICE announced a first delay in the decision and stated it was ‘minded not to approve’ funding Translarna – which costs around £400,000 per child – on the NHS without more evidence of its impact to justify costs.

Despite the second delay in the announcement, leading charity Muscular Dystrophy UK said the new information could help lead to a positive outcome for Archie.

Robert Meadowcroft, the charity’s Chief Executive, said: “We’re encouraged by the news that further information has been submitted by PTC and hope that this helps to create positive discussions in the next stage of the process.”

NICE confirmed that they would be issuing a ‘revised timeline’ this month.