“How Do You Explain To a 3-year-old That He Will Slowly Be Unable To Do The Things He Loves?”
August 16, 2015
The father of a boy with a degenerative disorder will join a team of cyclists who will be riding the length of Britain to fund research and raise awareness about this fatal and incurable condition.
Biddenham boy Leo Devlin, age 3, was diagnosed with Duchenne Muscular Dystrophy a year ago, a muscle wasting condition which mainly affects boy, and is losing muscle strength every day.
Most boys with the condition are in wheelchairs by the age of 12, with the condition becoming life threatening during their teens.
To halt Leo’s deterioration from this incurable disorder, it is imperative that treatments are developed as soon as possible, and to help with this his father, John, is joining 32 other riders, including four of his friends, Richard Randolph, Bully Rai, Warren Bagnall and Jon Tuffrey to cycle from Land’s End to John O’Groats, setting off on Saturday.
The aim of the cyclists is to raise over £70,000 for Action Duchenne, the national charity dedicated to finding a cure for Duchenne and improving the lives of those with the condition.
John said: “Leo is a lively, funny and loving boy who does not yet know the difficulties he will face. He enjoys kicking a ball, dancing to music, chasing bubbles in the garden and climbing on everything.
“He has started to become aware that he is different but how do you explain to a three year old that he will slowly be unable to do the things he loves? By cycling in a team for 1000 miles, we hope to be able to keep Leo walking, dancing, climbing and kicking for many years to come.”
And this is not the first event John has undertaken to help raise money for his son, as last summer he and his wife, Marie, ran the London Marathon, and they have also had support from family and friends who have arranging raffles, cake sales and more to get as much money as they can for their cause.
Over the last year alone, John and his family have accumulated £30,000, and for this cycling event John has managed more than £4,000.
The riders will be pushing off on the July 24 and hoping to complete their marathon journey 10 days later on the August 4. Paul Lenihan MBE, the CEO of Action Duchenne is taking part in the event. He said:
“This is the biggest fundraising event that Action Duchenne has ever done. We’ve been blown away by the dedication and support of families like the Devlin’s. Every penny raised will go towards funding cutting edge research and helping boys like Leo across the UK.’
Following this event, John and his wife are hoping to host a wine tasting event in October, and are looking for raffle prizes, promotional features, or any kind of support.
Thanks To Bedfordshire News for this piece: http://www.bedfordshire-news.co.uk/Father-cycle-Britain-year-old-son-Duchenne/story-27472038-detail/story.html#ixzz3hKfjx3x8
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