Why are we doing this? Who is 'Defending William Against Duchenne'?

William Eames, a beautiful, caring, funny, articulate little boy was diagnosed with Duchenne Muscular Dystrophy in January 2016 at just 3 years old.

Duchenne MD is one of the most common fatal genetic disorders to affect children around the world. 1 in 3500 boys are affected with DMD. It is a devastating, progressive and currently incurable muscle-wasting disease. Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin, a protein that plays a key structural role in muscle fibre function. Boys with DMD do not produce dystrophin.

Life expectancy is improving as standards of care and knowledge about Duchenne increase however, there is currently no cure for Duchenne.

We want to raise awareness of William and Duchenne – we need a cure, but we also need to ensure a fabulous life for William so his dedicated parents set up the cause Defending William Against Duchenne in January 2018. Launch of ‘Defending William Against Duchenne’
William needs a home he can move around safely in, and their current home needs adjustment to accomodate just a few things including:
• He can't use the stairs at bedtime, so mummy must carry him up (not good for her back).
• A new bathroom (downstairs!)
• The front door has a step and is too narrow for a wheelchair - it needs relocating!
• All the doors need widening for wheelchair access and flow.
And so, so much more...

So myself and some other stupid/brave friends are planning to abseil from the orbit at London's Olympic Park , which is the tallest largets UK sculpture on May 20th in order to raise funds for William