Community unites to Run for the Boys

Luke O’Hanlon and Brian Og McStravog are the inspiration behind this momentous challenge as dozens of supporters from the locality lend a helping hand in the ﬁght to ﬁnd a cure for the condition. Luke’s mum, Claire, and Brian Og’s mum, Kerry, are cousins, and both carry the faulty gene responsible for DMD. They are both determined to save their beautiful boys by helping to bring an end to the disease that has already robbed their family of four boys - Mickey, Paddy and PJ Hampsey, as well as Mark Darragh. Duchenne, the most common and severe of the 60 or so different types of Muscular Dystrophy, will noticeably begin to affect the boys in their pre school years. Initially the boys will be slower than their peers, will ﬁnd it difficult or impossible to climb stairs, will have difficulty getting up from the ground, and will walk with a waddling type gait. As the boys grow older the condition will progressively worsen with both boys likely to be wheelchair bound before they leave primary school. The disease will affect ALL muscles in the body making every day activities like feeding themselves, swallowing, turning in bed – impossible. The boys’ lungs and heart will also be affected and they will require 24-7 ventilation in their late teenage years. The boys have a life expectancy of only 18-25 years. There is no treatment or cure for Duchenne Muscular Dystrophy. Luke’s mum Claire explained how devastating her son’s diagnosis was for her: “When you are told that your adored little boy has a condition that will kill him you are completely consumed with feelings of guilt, anger, fear - and you have a choice as to what you do with that energy. “You can allow it to bring your world down around you, or you can stand up and ﬁght. We have opted to ﬁght, we won’t let Luke and Brian Og suffer the same fate as those before them.” Brian Og’s mum Kerry said: “The last 10 years or so have seen a hive of activity in the scientiﬁc world and we are now seeing drugs that are likely to change the course of the condition, being trialled in boys with Duchenne. “With adequate funding there is real hope that there could be a treatment on the market for our boys in less than 10 years. “If the trials are successful the boys will have access to drugs that can dramatically reduce their symptoms and that may give them a close to normal life expectancy. To us, that is something that is worth ﬁghting for.” As part of their fundraising attempts, the families have decided to get as many people as possible running the various lengths of the Belfast Marathon on Bank Holiday Monday 6th May, and at the time of going to press, 34 people from the Coalisland and extended townland areas have signed up to take part. Brian Og’s dad Brian said: “The sheer volume of people who have came on board in support of Brian Og and Luke is humbling. It is bound to be a record to have so many people from one small town running in the marathon for the same cause. “Rare diseases like Muscular Dystrophy, rarely get noticed at big events but our community is standing behind us to make sure that people are no longer blind to rare diseases like Duchenne.” The families are immensely proud of everyone in their community who have supported them in all their fundraising attempts and are looking forward to seeing how all their amazing runners perform on the day. If you would like to sponsor them, you can do so by following the link www.justgiving.com/runfortheboys