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 fund treatment for our Samson and help pave the way to give him the best life possible.
What is Duchenne?
Duchenne muscular dystrophy is a rare genetic condition caused by mutations in the dystrophin gene, which prevent production of a vital muscle protein called dystrophin.
The lack of dystrophin makes muscles more susceptible to damage and leads to muscle wasting over time. People living with Duchenne muscular dystrophy experience progressive muscle weakness and typically need to use a powered wheelchair from their early teens.
The heart and breathing muscles are eventually affected and most will require a ventilator in their twenties; life expectancy is around 30 years but has improved with palliative care developments.
There is no cure.
Why do we support Action Duchenne?
They have a clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy.
They work to deliver the vision through their three core objectives:
- Developing effective treatments for all by funding research, educating clinicians and researchers, supporting clinical trials and campaigning for access.
- Building a community by uniting families, educating about Duchenne and raising the profile of the condition to a wider audience.
- Striving for a more inclusive society by promoting the importance of human equality, day-to-day acceptance of disability and accessibility for those with Duchenne.
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