Defending William Against DMD
William, our beautiful, caring, funny, articulate little boy was diagnosed with Duchenne muscular dystrophy (DMD) in January 2016 at just 3 years old.
DMD 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. Life expectancy is improving as standards of care and knowledge about DMD increase however, there is currently no cure for DMD.
A diagnosis like DMD cannot be described, you lose a part of you, you change as a person, you could go either way……you can read our heartfelt story in mummy’s blog.
After a year of ‘anticipated grief’ for what we had been dealt, for all those things we would never see our son do, for a life lost before it had even started, for our daughter to one day be an only child – we decided that actions speak louder than words. We want to raise awareness of William and DMD – we need a cure, but we also need to ensure a fabulous life for our boy too so we set up Defending William Against Duchenne in January 2018.
We set up DWAD to raise awareness of DMD & William amongst our friends and local communities. We have raised over £22,000 for research; we have fundraised enough to transform our house into an adapted beautiful family home (lift and all); and we continue to educate people day in day out. There are some wonderful stories on our website of what amazing things have taken place so far.
As a family engulfed by DMD we are thankful that a patient organisation like Duchenne UK exists and that we can become a Family Fund. That we have a voice. That we have decisions as to where our money goes. That we can hope for a cure.
We want to raise awareness of William and DMD – we need a cure, but we also need to ensure a fabulous life for our boy too…DWAD will never stop raising funds or awareness.
So, what’s your forte? Quiz, raffle, crazy feat, masquerade ball, bake sale, party, fun run, gin tasting evening! Are you in a band, run a shop or part of a sports club – have you thought about bucket collections? Are you part of a sports team that selects local charities for big games? Does your business have a charity of the year? Are you a school that would do a non-uniform day or a charity bake? Would your team like a sponsor?
Published on 30 April 2021Share this articleCategories Family and Friends Funds