More than 70 walkers and runners from across the country will tog out in next week’s Dublin Marathon to raise €250,000 in support of three Roscommon-based brothers suffering from the rare and fatal disease Duchenne Muscular Dystrophy, among them 11-year old Archie himself.
The monies collected will go towards financing a dedicated clinic for the boys, as well as towards funding research into a cure for the disease. Brothers Archie, George and Isaac (7-year old twins ) all suffer from the progressive neuromuscular disease that destroys muscle tissue and is currently fatal.
Affecting approximately 110 boys in Ireland, Duchenne Muscular Dystrophy (DMD ) causes them to be wheelchair bound, usually between 8 to 12 years of age, and leaves them fighting for their lives by their late teens to early twenties.
DMD is caused by the breakup and death of muscle tissue through a lack of a protein called dystrophin, which leads to severe muscle wasting and premature death.
Archie, who is at the stage where he has to crawl up the stairs to go to bed, will take on the marathon in a running buggy, supported by five experienced runners who make up Team Archie.His story features among the videos created by sponsor SSE Airtricity for the Marathon.
Parents Paula and Padraic Naughton set up the Our Boys Trust in 2014 as a community initiative to support their young sons and fellow DMD sufferers.
Paula, who is among those running next week, said: “I look at my son and he is completing a marathon every day. Just to get off the floor. Just to walk. Just to do what we take for granted. To be told that one of your children has a fatal disease, with no treatment or cure is devastating. To be told your three children have a fatal disease with no treatment or cure is beyond comprehension; it is beyond words.”
Alongside financing research into the disease, the monies raised will assist with the construction of a specially equipped HSE-approved “house clinic” for the brothers, which will to be owned and managed by the Trust. Work is scheduled to commence on the facility by the end of this year.
Donations can be made at www.idonate.ie/fundraiser/11366300_team-archie-fundraising-page html or via www.joinourboys.org