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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.
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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