William, our 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.
As a family we had never heard about this condition, and we are still learning……we will always be learning, and hoping, for a cure. We want to raise awareness of William and Duchenne – 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. Launch of ‘Defending William Against Duchenne
We have been so grateful to those that have raised money for both William and Duchenne research since his diagnosis in 2016. This is something we will continue to make William’s life unforgettable but also to help fund research for a cure of this horrible condition.
Defending William Against Duchenne, DWAD, was set up in 2018 with the hope to raise awareness and funds – we have been overwhelmed with the amazing support of friends near and far….see our stories for what amazing things have taken place so far.
In 2019 we managed to totally adapt and renew our house to make it the most wonderful home for us all, with no obstacles for William. He can now enjoy his home like any other regular kid.
We want to raise awareness of William and Duchenne – 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?
Thank you in advance for all of your help and support.
All proceeds donated into this unincorporated charity will be used for the development, wellbeing and happiness of William Eames.
Barclays Bank account: Defending William Against Duchenne
Account Number: 83768740
Sort Code: 20-05-73
PayPal: defendingwilliamagainstdmd@gmail.com
Keep up with all our news on William’s developments:
Facebook: www.facebook.com/DefendingWilliamagainstDuchenne/
Email: defendingwilliamagainstdmd@gmail.com
Twitter: @DefndwilliamDMD
Website: https://defendingwilliamagainstduchenne.wordpress.com/
Instagram: defendingwilliamdmd
Hi Jo and Matthew, I am a friend of your mum’s Matthew and as it’s coming up to her 70th birthday I have decided against buying her a present and donating a small sum to William and his cause instead. I wish you all the best and send my love to you all Margaret Osgood x
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Many thanks Margaret, that is extremely kind of you x
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