A TEENAGER suffering with muscular dystrophy has travelled to London to lobby Parliament over his condition.
Matthew Barrett, pictured, 16, went to the capital with dad Garry and his partner Tracy Wilmot on Wednesday.
People living with Matthew's type of muscular dystrophy – Duchenne – rarely survive beyond early adulthood.
Matthew, of Weston- super-Mare, has made the pilgrimage to 10 Downing Street since he was nine years old, to support the Action Duchenne's Race Against Time campaign. The theme of this year's campaign, organised by Action Duchenne, is Boys to Men, reflecting the issues which affect sufferers at each stage of their lives.
Action Duchenne has produced a document, which they are presenting to MPs, asking for progress in four key areas:
● Centres of Excellence for Duchenne.
● £5 million in five years for research funding.
● Access to specialist educational assessments and interventions, careers advice and support for independent living.
● A simplified means of clinical trials for genetic medicines
Dad Garry said: "Now all the razzmatazz of the jubilee celebrations has died down, Matthew hopes that MPs will quickly return to the serious business of making Britain a great place to live. Matthew has Duchenne muscular dystrophy, and has been making an annual trip to London to ask Parliament for funding into finding a cure for his disease since 2005.
"When Matthew made that first journey to London at the age of nine, he could still walk a little, but by the end of that year he was unable to stand unaided.
"In spite of the inexorable progress of the disease, he remains determined to get as much as possible out of life, and to play his part in eradicating Duchenne.
"There have been many advances in the treatment of Duchenne muscular dystrophy since Matthew first handed in a letter to Tony Blair in 2005, but sadly the disease remains incurable.
"Several of the people whom Matthew has met during his campaigning are sadly no longer with us; a number of people of his age have lost their lives during the past few years.
"We need action now before it is too late for Matthew."
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