Lynnette Ellison
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 is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (around 2500 people have DMD in the UK).

Because the Duchenne gene is found on the X-chromosome, it primarily affects boys with less than 1% of those with Duchenne being female. However, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties. Life expectancy is improving as standards of care and knowledge about Duchenne increases , and some men live into their 30’s and 40’s

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone.

Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne. Lynnette Ellison