Half-marathon challenge to raise funds for Tara child with rare life-limiting genetic disorder
A FAMILY friend of three-year-old Darragh Brangan from Tara will run the Ratoath Half Marathon on 13th September to raise funds for the little boy who suffers from life-limiting disorder Duchenne Muscular Dystrophy (DMD).
DMD is a rare, incurable, and life-limiting genetic disorder that causes progressive muscle degeneration for which there is currently no cure.
To support the family, close friend Niamh Dexter is raising money by running the Ratoath half marathon with funds to go towards equipment, therapy and home adaptations for Darragh.
Niamh said: "Darragh has severe muscle weakness but like most three year olds he doesn’t let that stop him. His mum Zoe is a dear friend of mine who has spent her career nursing sick children and adults with empathy and compassion. Zoe and Gordon work so hard for their three beautiful children so anything at all that I can raise here will go a long way towards equipment/ appointments or anything that Darragh needs at home."
Darragh's diagnosis at just 18 months of age came as a devastating blow to his parents Zoe and Gordon.
His mum Zoe said: “We were in Crumlin for a week and I had been by Darragh's side the whole time on this day I went home just to get into bed for an hour and Gordon rang me and said a neurologist had been in and she reckoned Darragh has Duchenne. I have previously cared for boys who have had Duchenne and instantly I just knew what that meant. It was just absolute devastation.
"We always thought we would stand on the sidelines and watch him playing for Skyrne. We wished it then and we wish it now that we could take this from him.”
Since Darragh's diagnosis, Zoe and Gordon have been raising awareness of the condition while caring for Darragh and their daughters Ellie and Katie. They describe Darragh as "resilient, cheeky, and affectionate".
Zoe told how Darragh loves tractors, diggers, and bin lorries, and is happiest holding someone’s hand, but his condition means he suffers frequent falls, tires easily, and will eventually need a wheelchair as his muscles weaken. The Brangans are also trying to do their part to help other families in the same situation by building a community of support, with Zoe recalling how lonely they felt leaving hospital with Darragh after he had been diagnosed with a life limiting condition where he will get progressively worse.