In November 2015 our family received quite possibly the worst news any parents could receive. Our always joyful, happy and beautiful 3 year old son was diagnosed with an incurable/terminal condition, Duchenne Muscular Dystrophy (DMD)
No parents should out-live their children, but sadly this will be the case for us.
Please help and support us by raising funds for Action Duchenne, so they can find a cure and save the life of our Samson.
What is Duchenne?
Duchenne muscular dystrophy (DMD) is a rare and complex genetic muscle wasting condition, mainly affecting males. It one of the most severe muscular dystrophies, with muscle weakness appearing in early childhood between the ages of 2-5.
Many of those with Duchenne lose the ability to walk in early adolescence and young people with Duchenne typically live into their late 20’s. Life expectancy is improving all the time as standards of care and knowledge about Duchenne improve, with some people living into their 30’s, 40’s and even beyond.
In the UK, Duchenne affects around 1 in 3,500 male births, with around 2,500 people living with Duchenne.
Although mainly inherited, Duchenne can still occur randomly in any family.
There is currently no cure for Duchenne.
Why do we support Action Duchenne?