Blyth mother in plea to Prime Minister over breakthrough drug for her son's rare disease

A mother from Blyth has described her agony at waiting months for a crucial NHS decision on whether a breakthrough drug to treat her son's rare muscle disease will be approved.

Lilian Pegg's 10-year-old son, George, and four other boys who also suffer from Duchenne Muscular Dystrophy today delivered letters to David Cameron in a last attempt to secure his support ahead of NHS England's decision at the end of the month.

Earlier today in Prime Minister's Questions Mr Cameron said he recognises "how vital it is to give those affected and their families a decision as soon as possible" but refused to answer whether the drug would be granted.

The drug, Translama, is the first to treat the disease, which causes severe disability and cuts life expectancy to around 30.

It was developed by experts at Newcastle University and is already available in European countries such as Germany, Spain, France and Italy, after approval by the EU last year.

Lilian Pegg told ITV News Tyne Tees her son has depended on the drug for six years and that they urgently want a decision to be made:

The delay in the decision comes after the NHS held a consultation earlier this year about how to approve drugs for rare conditions, causing similar frustrating waits to approve crucial drugs for other conditions.

It costs around the same as current drugs to treat Cystic Fibrosis, Muscular Dystrophy UK said.

Watch our full interview with Lilian Pegg tonight, June 10 at 6pm on ITV.