PARENTS of a boy who has a muscle-wasting condition have to wait an agonising four weeks for a decision on whether to approve treatment on the NHS.

Dominic and Tammy Wright's son, Leyton, was diagnosed with spinal muscular atrophy (SMA) when he was a baby.

The family, from Lower Darwen, were left devastated when the National Institute for Health Care Excellence (NICE) ruled the drug spinraza, used in USA and Europe, too expensive to use on the NHS.

There was also doubts about its long-term effectiveness.

The parents, along with other families, joined campaign group TreatSMA and took part in a protest against the decision during an appraisal meeting outside NICE's headquarters at City Tower in Picadilly, Manchester.

Mr Wright, 28, said a decision on whether the drug will be allowed to be supplied through the NHS will be made on April 17.

He said: "It's a horrible feeling.

"Years we have been fighting and now we have to wait another four weeks for an answer that could potentially still be a no.

"It's frustrating not knowing what the outcome is going to be when its your child's life on the line.

"If the decision is a no, there is no positive outcome as my son wont be treated.

"We have discussed potentially trying to get him treated elsewhere if the UK is a no."

Leyton, now six, has battled with the incurable condition and has never been able to walk independently and uses a special adapted wheelchair to move around.

Mr Wright said if his five-year-old son could have access to the drug, also known as nusinersen, it may help him maintain his current strength.

Each dose of spinraza costs £75,000 and four are required in the first few months of treatment with regular follow-up doses every four months.