Courageous teenager fighting for life changing treatment

Simon Danczuk, Christian Darlington and Councillor John Blundell

Christian Darlington, 18, of Rochdale Road, Firgrove, suffers from Duchenne muscular dystrophy and wants the NHS to approve a new drug which helps younger patients combat the disease.

Translarna is the first proven treatment for the condition, but it has not yet received approval from the National Institute for Health and Care Excellence (NICE).

The body, which is responsible for deciding which treatments are funded by the NHS, has repeatedly delayed making a final ruling on the drug - which can cost up £200,000 per patient per year.

Some families have been forced to relocate to France, where Translarna is available, in order to get treatment.

Christian is too old to benefit from the effects of Translarna, but wants children diagnosed with Duchenne muscular dystrophy to live longer and more active lives.

His campaign has now received the backing of Rochdale MP Simon Danczuk.

Mr Danczuk has pledged to lobby Health Secretary Jeremy Hunt and to ask the Government to direct NICE to fund Translarna.

Christian said: “I know better than anyone what it is like to live with Duchenne muscular dystrophy and I strongly believe the NHS should be doing all it can to help young children with this disease.

“This isn’t about me, it’s about doing what is right for future generations. Families should not have to move to France to get access to this treatment.”

Councillor John Blundell, who represents the Smallbridge and Firgrove ward where Christian lives, acted as his carer for a number of years.

Councillor Blundell said: “I think it is fantastic that a young person wants to help others secure access to this drug, even though it’s too late for him.

“People with this condition are lucky they have someone like Christian fighting to help them. I have no doubt Simon Danczuk will campaign tooth and nail on this issue until the right decision is made.”

Mr Danczuk said: “Christian is a selfless and inspirational young man who is a credit to his family and to the town of Rochdale.

“Duchenne muscular dystrophy is a terminal, life limiting, condition and the NHS should be permitted to do all it can to help young children diagnosed with this dreadful disease.

“I have written to Jeremy Hunt to urge him to prompt NICE to approve the use of Translarna and I will seek to raise this issue at every available opportunity until it is approved.”