A “MIRACLE” drug which could help thousands of people with a lifelong genetic condition is not going to be offered on the NHS due to cost.

But 19-year-old spinal muscular atrophy sufferer Becca Torricelli is one of many urging the National Institute of Health and Care Excellence (Nice) to rethink its guidance.

Her condition affects the nerves in the spinal cord which control movement, causing muscle weakness, progressive loss of movement and difficulty breathing and swallowing.

It is the number one genetic killer in infants and confines many sufferers to wheelchairs.

There are currently no active treatments targeting the underlying cause available on the NHS.

Spinraza is used in America and 22 European countries to treat the spinal muscular atrophy (SMA).

But Nice says it is too expensive.

Becca, from Worthing, who studies English literature and creative writing at the University of Winchester, said: “Despite my disease I try to lead as normal a life as possible and even though I am close to my family, I love the freedom and independence I’ve had since moving away from home.

“During trials for Spinraza, infants with type 1, which is the most severe type of SMA, who would never have walked, crawled or sat unaided, were able to sit, stand and walk.

“It has gone through extensive clinic trials, which were so successful they stopped the trials early because it was deemed unethical to those receiving the placebo because others were improving so dramatically.

“There is no way to describe this drug other than a miracle, but Nice’s report said they do not recommend Spinraza to be used as treatment through the NHS.

“We have been given so much hope, and that has now been taken away.

“Nice has said its next review of the drug isn’t for three years, and when you think of the number of people who will die in that time, it’s just insane. I don’t know how they can put a price on someone’s life.”

Meindert Boysen, director of the centre for health technology evaluation at Nice, said: “The committee accepted that SMA is both rare and a very serious condition that can have a severe impact on people with it, as well as on family members and carers, and that there is an unmet need for effective treatments.

“The committee was willing to be flexible because of the nature of the condition and the paucity of the evidence, but the very high cost meant it could not recommend the drug as a cost effective use of NHS resources.”