Family’s giant Leap for Luke raises £3,000
Claire and Aidan O'Hanlon, with fellow Leap for Luke team members, Leon Daly, Damian McCaughey, Marty Hamilton and Maurice Boyd, pictured before their Zipline Challenge last weekend. INTT3512-061X
FAMILY and friends of a Coalisland toddler, who suffers from a life limiting muscle wasting condition, have literally taken a leap of faith to help find a cure for the disease, by launching themselves more than 100 feet across the River Lagan.
Luke O’Hanlon’s parents, Aidan and Claire, from Derrytresk, have described the fundraising zipline event, which took place last weekend, as a “scary challenge, but worth the adrenaline rush!”.
The couple, along with fellow Leap for Luke team members, Leon Daly, Damian McCaughey, Marty Hamilton and Maurice Boyd, managed to raise a fantastic total of £2,825, and, with more pledges still to be counted, it’s hoped that they will break the £3,000 mark for two neuromuscular charities, Action Duchenne and Muscular Dystrophy Campaign.
And such is the overwhelming support the O’Hanlon family have received since their story was first publicised in the Tyrone Times, that they have now set themselves an even bigger fundraising target of £20,000 by this time next year.
One year-old Luke suffers from Duchenne Muscular Dystrophy (DMD), which affects mostly boys in around one in every 3,500 births.
Signs of the disease usually start in infancy and progressively get worse, with children typically needing to use a wheelchair full time by their early teens and needing full time ventilation by their late teens.
Life expectancy for sufferers is 18-25 years.
As yet there is no cure for this cruel disease but for the first time ever a treatment is tantalisingly close.
Several potential treatments are currently in late clinical trials and it is expected that a treatment could be on the market within the next decade.
To help medical experts find that cure, Claire and Aidan have thrown themselves whole-heartedly behind their own fundraising challenge, and are extremely grateful to all those who have helped them so far.
Speaking following the River Lagan Zipline Challenge, Claire told the Times: “Myself and Aidan would like to say a huge, huge thank you to the team and to everyone who supported us. You are amazing!”
Claire continued by thanking all those who have offered to hold fundraising events to help the charities identified by the family.
“So many people have already offered to run marathons, hold coffee mornings, or organise nights out, and their support has been overwhelming”, she explained.
“So much so that we have set Leap for Luke a fundraising target of £20,000 by this time next year. So if you are an individual with a fundraising idea, a business wanting to donate to a charity or an employee with a vote on your company’s charity of the year, please choose Leap for Luke/ Action Duchenne.
“The money you raise will not only help to keep little boys like Luke mobile for longer but will also help to save their lives and save their families the agony of watching their children deteriorate before their eyes. If anyone has any ideas please get in touch. Thank you so much!”
You can find out more information about future Leap for Luke events - which include a Fancy Dress Disco on Saturday, October 27, at The Gables, Carland - by visiting the page on Facebook.
Action Duchenne (www.actionduchenne.org) is a charity run by Duchenne Parents and dedicated to finding a treatment in the next five years.
They are also campaigning to have a neuromuscular Centre of Excellence in Northern Ireland like those in Newcastle and London. Patients at these centres have a much higher life expectancy than children with Duchenne in Northern Ireland.
The Muscular Dystrophy Campaign provides funding for research and support into around 60 different types of neuromuscular conditions. They also campaign for better care services for patients in Northern Ireland.
Both organisations are dedicated to finding a treatment and eventually a cure for Duchenne.
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Sunday 19 May 2013
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