Relatives of stricken brothers plead for drug to slow decline

Three brothers who have been struck down by a rare disease will have to plead their case for life-saving drugs.

Daniel Mathieson, 19, and brothers John, 18, and James, 16, have been told they will be lucky to live beyond their 20th birthdays.

They already have to use wheelchairs and fear time is running out as the muscle-wasting illness Duchenne muscular dystrophy ravages their bodies.

Their only hope lies with a new drug that could slow down the muscle deterioration, but it is not available on the NHS.

After pleading their case to MSPs on Wednesday, the family are hoping to arrange a private meeting with First Minister Alex Salmond, Health Minister Nicola Sturgeon and Angus MSP Andrew Welsh.

Speaking from the family home in McGregors Walk, Arbroath, their stepfather, Norman, 41, said: “We put our point of view forward, but didn’t get much of a response.

“Hopefully in the next two to three months we will go forward to meet the first minister.

“Every day is hard because their lifespan is so short.

“We realise that one day we’re going to go into their room and find they’ve passed away. It’s hard to cope with that.

“There are drugs out there which could help them to live longer. But it’s a case of convincing the NHS to stump up the money to get them launched.

“That’s not easy.”

The condition the three brothers have attacks every muscle in the body.

Victims are left unable to walk and it eventually causes problems with the heart and lungs.

Only around 250 people in Scotland have the illness, and it’s unheard of for three brothers to all be struck down by it.

Sufferers rarely live beyond their late teens. It affects only boys and is passed on through a faulty gene.

The Mathiesons took the appeal to the Scottish Parliament this week and pleaded with MSPs to free up money to make their lives easier.

Moray man Mike Gray died last year after he was forced to campaign for the NHS to pay for his treatment for cancer, and Aberdeenshire man Barrie Clark, who faced the prospect of paying £1,000 for cancer treatment, won his battle to receive it free on the NHS.