Robert Newman
Stanley's Heroes Family Fund
Fundraising for Muscular Dystrophy UK
Story
Thanks for taking the time to visit my JustGiving page.
Stanley Oscar Newman was born on 9th May 2012 after a normal pregnancy weighing a healthy 7lb 10oz, a baby brother for Robbie & Alfie. After a perfect year his strength started to regress & he became weaker, unable to stand, crawl or walk.
A year later, after countless medical procedures, he was diagnosed on 25th June 2014 with Congenital Muscular Dystrophy, a progressive muscle wasting disease which has no cure or treatment.
CMD has over 30 sub-types of differing severity & rate of deterioration, so we then began a second agonising wait to discover which type of CMD Stanley has.
10 months later, on 15th April 2015, we were given the news that doctors had found the gene responsible for Stanley's condition; the Lamin A/C Gene. A fault in this gene causes a severe form of CMD called LMNA CMD (also know as Lamin A/C CMD, L-CMD or Laminopathy).
Laminopathies can cause a considerable reduction in life expectancy, progressive weakening of skeletal muscles, respiratory insufficiency, dilated cardiomyopathy (weak & enlarged heart) & Conduction System Disease (disease of the electrical system of the heart). Laminopathies do not affect awesomenes.
As CMD is such a rare muscle wasting condition, there is very little in the way of funding for research into finding treatment, which is why we have set up a Stanley's Heroes Family Fund.
We began our fundraising on 18th April 2015 when Stanley's Dad, Rob completed a skydive for Muscular Dystrophy UK, raising over £1000.
Our next event will be on Sunday 7th June at Clacton Fire Station in Essex. Our Open Fun Day & Car Wash is in conjunction with an Eden Project called The Big Lunch, a community get together with lots of fun attractions.
With the kind support of Muscular Dystrophy UK, we will do everything we can to raise awareness & money for vital research towards finding a cure for this cruel disease.
Stanley is the perfect antidote to the concern his condition brings, he is happy, bright & very funny. He continues to teach us what is important in life; family, friends, hope, love & happiness. After all, the happiest people do not have the best of everything, they just make the best of everything.
We appreciate you taking the time to read Stanley's story. All donations of any size will be greatly appreciated, if you cannot afford to donate you can still easily help Stanley by sharing this page with your family & friends.
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