Brave MD sufferer meets with his MP

Matthew and his mum Sue, of Mill Road Avenue, took part in the Race Against Time campaign to highlight the plight of thousands of people who, like Matthew, have the severe muscle wasting condition, Duchenne muscular dystrophy.

They met their MP Nick Herbert, who pledged to back efforts by the Muscular Dystrophy Campaign to secure the extra money it needs for the vital research.

The Arundel and South Downs MP said: "I was honoured to meet Matthew and Mrs Berry and I will strongly support the campaign for funding to develop a treatment for Duchenne muscular dystrophy. I will do whatever I can to highlight this important cause."

More than 180 parents and family members lobbied MPs and the Department of Health to press for the 5m needed for new research into gene therapy, on top of 1,5m already given by the government. Matthew was among those who handed an open letter to Health Secretary Patricia Hewitt.

Said Mrs Berry: "There is now real hope of finding a cure or treatment for Matthew. We need to persuade the Government of the value of supporting research into potential cures which are sitting on shelves, and could save the lived of hundreds of boys each year.

"Finding out that Matthew had Duchenne was devastating news. The reason we went on the march was that the government needs to be aware that this condition is curable if they are willing to put money into research."

Families, she added, were "angry and frustrated" about the lack of treatments and cure available for the genetic condition. It affects only boys, and limits their life expectancy to early adulthood. After symptoms first appear between the ages of three and five, it develops progressively and by the age of 12 boys who are affected become full-time wheelchair users. Two more boys each week are diagnosed with Duchenne.

Hopes that the government would take the lobby seriously were raised when health minister Jane Kennedy arranged a meeting this week with representatives of the Muscular Dystrophy Campaign and family support groups.

Mr Herbert has signed an Early Day Motion calling for the funding, and has also joined the all-party group on muscular dystrophy at Westminster.

Added the MP: "The 5m needed is a relatively small amount from the overall health budget of 70bn a year. It is an affordable sum."