THE family of a seriously ill Hampshire boy are to plead face-to-face with the Prime Minister for the vital medication that will change his life.

Jagger Curtis, seven, suffers from Duchenne muscular dystrophy, which means he is unlikely to live beyond his 20s.

His family, from Romsey, were given hope after he was chosen as one of four boys in the area that could be helped by a new drug called Translarna, but his family’s hopes were dashed last month when it was announced that funding for the medication had not been approved by NHS England.

Romsey MP Caroline Nokes is backing Jagger’s family and will take them to Number 10 next week to lobby the PM.

Ms Nokes questioned health minister Ben Gummer as to when a decision on its availability will be made, and said: “NHS England urgently needs to reach its decision as families affected by Duchenne muscular dystrophy do not have time to spare as their sons get weaker each day.”

James Johnson Mr Gummer said that an NHS England decision, expected to be on June 25, would cover funding of Translarna for the 2015-16 financial year.

A longer-term decision rests with National Institute for Health and Care Excellence (NICE), which may not issue final guidance until February next year.

Just 50 children in the UK have Jagger’s mutation of Duchenne muscular dystrophy.

Liberal Democrat MP Greg Mulholland launched an furious attack on NHS England for “failing to respond to letters or turn up for meetings”.

Mr Gummer said acknowledged that Jagger’s case is “distressing”.

He added: “It is a terrible disease that causes lasting pain to the sufferers and their families.

“That is precisely why we are pushing hard for a decision from NHS England by the end of this month – it could not have come as quick as he had hoped – and for interim NICE guidance by the end of this year.

“I am pushing officials to move as quickly as they can on this.”

Nic Bungay, director of campaigns, care and information at Muscular Dystrophy UK, said: “We cannot have a situation when even one child becomes ineligible for a drug because of NHS England delays.

“We and families affected by Duchenne muscular dystrophy are pressing NHS England for fast access to Translarna.”