Last Year in October 2013, my 3 year old Nephew, Jack, was diagnosed with a degenerative condition called Muscular Dystrophy. Jack is like any other young boy who loves playing, running, football and Star Wars (he may have been influenced by his Uncle’s on the last one). However, his ability to enjoy most physical activities will be diminished in a relatively short period.There are several forms of Muscular Dystrophy and unfortunately, Jack suffers from Duchenne Muscular Dystrophy (DMD), which is the most severe.
Children affected by this condition lack the ability to produce a protein called Dystrophin, which is responsible for muscle cell and tissue regeneration. Sufferers of DMD are initially affected by muscle weakness in the hips, pelvic area and thighs. The first indication that Jack had a problem was that it took him a long time to start walking and afterwards, had trouble getting/pulling himself up.
In most cases children with DMD will require braces by the age of 10 to enable them to walk but by 12 may be wheelchair bound. As the disease progresses, more of their body’s muscles begin to weaken and eventually affects the airway, lungs and heart. Typically boys with DMD die in their mid 20’s but, with medical advances and the proper management, cases of sufferers living until their early 50’s have been reported.
However, there is hope that a cure or treatment can be found and we are closer than ever before. For example, there is a new treatment for sufferers with a particular type of DMD that is likely to be approved this year and made available by 2015. (http://www.bbc.co.uk/news/health-27538198). Whilst this treatment will not help Jack, we are optimistic that it is only a matter of time before a cure or treatment can be found to help him.
A lot of the research for these treatments are being funded by donations and fund raising events. As a family we couldn’t stand by so we decided we would try to raise as much money as we could to help fund a cure for Jack’s condition.
Fund Raising – Donation link:
We set up a website called Fighting Back For Jack http://fightingbackforjack.co.uk/ with the aim of raising at least £10,000. All proceeds are being directed to the Duchenne Breakthrough Research Fund (http://www.muscular-dystrophy.org/duchennefund), which is being organised by the Muscular Dystrophy Campaign.
We are organising several fundraising events over the next 18 months including a Charity Football match, Cricket Match and a Golf Day. Several our family are also taking part in a sponsored swim as well as the Coast to Coast Challenge 2015.
Both myself and my family greatly appreciated the support of ATS in raising money and awareness of Duchenne Muscular Dystrophy.
About ATS Community:
ATS Community sponsors ATS employees who wish to make a personal effort to participate in activities for Charity in a sportive way. Find out more information on:
ATS Community – Fund Raising page Russel Young (no 93) after the Dorridge Fun Run.
