Weʼve raised £9,117 to Give Ben the best Quality of life #BenvsDuchenne
- Funded on Monday, 10th December 2018
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.
WHAT ARE WE DOING?
On 22nd September, an intrepid group of Dads (Alex Clarke, Angus Burnett, Paul Kelly, Jack Taylor, Stuart Connelly, Nicholas Coleman and Daniel I'Anson) will be walking 50km in a day from Little Wittenham (near Dorchester) to Henley on Thames. Taking us past Shillingford , Wallingford, Moulsford , Goring , Pangbourne , Purley on Thames , Reading , Sonning , Shiplake and Henley. All with varying levels of fitness and preparedness.
WHY ARE WE DOING IT?
On 31st August 2017, the lives of the Clarke Family changed forever.
At age 4, their eldest son Ben (who we have known from before he was born), an amazingly brave, funny, caring and loving little boy, was diagnosed with Duchenne Muscular Dystrophy (DMD). DMD is one of the most common fatal genetic disorders to affect children (mostly boys) around the world. It is a devastating, progressive and as yet incurable muscle-wasting disease, gradually robbing Ben of his ability to move and breath independently, also impacting his heart function.. The current life expectancy for children with Duchenne is their early 20s.
As with all parents, Alex and Lisa want to provide Ben with the best possible quality of life and amazing experiences. In order to ensure Ben's on-going well-being, amongst other things, they will need to carry out major mobility adaptations to their house and an electric wheelchair will be a necessity sooner rather than later.
By doing this we want to raise awareness of this cruel condition and our wish is for Ben, and everyone living with Duchenne get the support to have the longest and most fulfilling lives possible.
All proceeds donated into this fund will be used for the future well-being, and development needs of Ben.
- 1 day ago
Alex Clarke1 day ago
From all of us we just wanted to let every single one of you know that we are totally overwhelmed by your unquestioned generosity to support Ben and us as a family. Your donations will go a long way to helping us provide Ben with all he needs and a wonderful quality of life! Thank you from the bottom of our hearts!!!
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Alex Clarke started crowdfunding
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Nov 30, 2018
Nov 29, 2018
Brilliant achievement. Sounds like you didn’t have to suffer Nick’s company on the way round which would have been a bonus!
Nov 17, 2018
Lots of love from all of us xx
Nov 7, 2018
Well done for raising so much guys! Lockers! - Friend of Angus Burnett
Michael & Michelle Digman
Oct 22, 2018
Well Done Stuart and the other dads!
Oct 12, 2018
From Philip Watts and John and Janine Glen ...
Oct 1, 2018
Well done to all the Dads! - Jack Taylor - 100kms next time!!
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