Matthew goes to London to support campaign
PUBLISHED: 17:00 30 June 2012
A WORLE teenager who suffers with an incurable disease travelled to London to raise awareness of the muscle-wasting illness.
It was Matthew Barrett’s eighth year of supporting a Duchenne muscular dystrophy campaign and he was chosen to present an important document to representatives from the Department of Health.
The 16-year-old, who is unlikely to live past the age of 20, 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.
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.
The theme of this year’s campaign, organised by charity Action Duchenne, is Boys to Men, reflecting on the issues that affect sufferers at each stage of their lives.
Action Duchenne has produced a document, which was presented on the day, asking for progress in four key areas.
Matthew currently receives his medical care in Wales, as he lives there with his mother during school terms, but lives with his father Garry in Trenleigh Drive, Worle, during much of the holidays.
Matthew needs to see many specialists and the disease has taken its toll on his physical condition to such an extent that he now needs night-time ventilation, assistance with coughing and sometimes help with feeding himself because his arms get tired. But his family says his spirit and good humour are ‘undimmed’.
They have set up the Matthew Barrett Fund to help raise money for Matthew pay for things he needs or will give him a better quality of life such as enhancements to his wheelchair, trips out and holidays.
Money from the fund also goes to Action Duchenne, the national campaigning organisation that raises money and campaigns for a cure, new treatments and better standards of care for those living with Duchenne muscular dystrophy.