A year later, after countless medical procedures, he was diagnosed on 25th June 2014 with Congenital Muscular Dystrophy (CMD) a progressive muscle wasting disease which has no cure or treatment.
CMD has over 30 sub-types of differing severity, and the family began a second agonising wait to discover which type of CMD Stanley has.
10 months later, on 15th April 2015, they 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 known 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 and a weak and enlarged heart. Laminopathies do not affect awesomeness.
Rob and Laura had their third child, Stanley Oscar Newman, on 9th May 2012. After a perfect first year his strength started to regress and he became weaker, unable to stand, crawl or walk.
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 the family have set up a Stanley’s Heroes Family Fund.
With the kind support of Muscular Dystrophy UK, we will do everything we can to raise awareness and 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 and very funny. He continues to teach us what is important in life; family, friends, hope, love and happiness. After all, the happiest people do not have the best of everything; they just make the best of everything.”
The family began fundraising on the 18th April 2015 when Stanley’s dad, Rob, completed his skydive for Muscular Dystrophy UK. He raised over £1,000.
Since then, the family have raised an amazing £9,600 with their events.
How you can help
Muscular Dystrophy UK has been supporting families affected by congenital muscular dystrophy since 1959 funding research to find a treatment for this condition. With your help we can continue to fund research which could improve the lives of individuals living with this condition.
Setting up a family fund, like Stanley’s Heroes, is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our Family Funds.