THE mother of a boy with a life-limiting degenerative condition said her family faced an “agonising” wait to find out if a crucial drug would be made available on the NHS.

Kathy Wedell’s 11-year-old son Isaac White has Duchenne muscular dystrophy, a disease which will eventually stop him from walking.

The mum from Marston in Oxford spoke ahead of today’s meeting in which the National Institute for Health and Care Excellence (NICE) will decide whether to recommend breakthrough drug Translarna.

But news of the decision is not expected until mid-December.

Those affected by DMD normally lose the ability to walk by the age of 12 and have a life expectancy in the mid-20s.

Miss Wedell said: “The wait for news on Translarna’s future is agonising.

“We see children in other countries already benefitting from the drug, but here they could lose out altogether if the wait continues.”

She added: “Isaac is still walking but that is down to being on the drug’s clinical trial and it is absolutely crucial now we find out if it will be funded on the NHS.”

In October NICE refused to recommend the drug until further evidence and justification of cost was brought forward – which will happen later today.

It is thought the drug would cost between £150,000 and £300,000 per patient per year.

Isaac was diagnosed with DMD when he was just four.

Miss Wedell added: “Isaac’s condition is devastating.

“With Duchenne you watch your child losing muscle power daily, walking shorter and shorter distances.

“And there is a high risk of falling and breaking bones and not being able to enjoy life as a child should. You know it’s going to get worse.”

For the past 18 months Isaac has been taking part in the drug’s clinical trial.

Despite not being sure whether he has been taking Translarna or a placebo, Miss Wedell said the effects had been life-changing.

She said: “It has slowed down the progression of Duchenne for Isaac. His stamina has massively improved. He can manage a full week at school, after-school clubs and swimming.”

Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said: “Families have hoped for decades for a way to intervene in the merciless progress of Duchenne muscular dystrophy. Translarna is the first treatment ever to offer this chance.

“When NICE meets today we urge them to do all within their power to find a workable solution for delivering on this long-awaited breakthrough.”

He added: “As Duchenne is progressive we cannot afford to go through this convoluted process each and every time a new therapy is in sight. The emotional cost for families cannot be justified.”