Sam Adams

Sam Adams

Running and Walking 120k

For Elliot's Endeavours Link opens in a new window

Supporting

Total raised so far£0.00

Total plus Gift Aid: £0.00

Target£0.00

Raised offline: £0.00

My story

[p]Hi everybody thank you for taking the time for looking at my page. Until last week I had never heard of Duchenne Muscular dystrophy And the devastating effects it can have on many families. My friend Lucy and her husband will have recently had their son Elliot diagnosed with DMD.[/p][p]Here is Lucy's story: [/p][p]"Our son Elliot has been diagnosed with Duchenne Muscular Dystrophy (DMD). For those who haven't heard of it, don't worry, neither had I & neither had some medical professionals. It's taken years to get Elliot diagnosed (not helped by Covid). [/p][p]DMD is rare genetic disorder, primarily found in boys, which means Elliot can't produce a protein called dystrophin, vital for muscle growth. Without dystrophin, the muscle cells waste away & die & once they are gone, they are gone. [/p][p]Typically, boys with DMD lose the ability to walk between the ages of 8-12, they become paralysed from the neck down by their late teens & eventually the muscles around thier lungs & heart cease to function. Life expectancy is early 20's. [/p][p]DMD is 100% fatal, treatments are ineffective & there is no cure. [/p][p]Naturally, Will, myself & our family are completely crushed. Although Elliot is no different today than he was 3 months ago, our future as we thought we knew it (the future that we have worked so hard to build) has been ripped from underneath us & a very different, challenging, heartbreaking one stands before us. [/p][p]Having to watch Elliot's health deteriorate over the years & the thought of having to explain to him why he won't be able to join his friends in activities that we so often take for granted (like playing sports, riding his bike down the park etc) is no doubt going to be the hardest conversation il ever have in my life & even now, just the thought of it brings me to tears. [/p][p]But in amongst this darkness, there is a glimmer of hope. Around the world there is a global army of scientists trying to find suitable treatments & even a cure for Duchenne. [/p][p]Will & I & our families will be devoting our lives to raising awareness & fundraising for Duchenne. The charity we have chosen is Duchenne UK, a charity founded by 2 mothers of Duchenne boys who have already made huge waves in the last ten years trying to get clinical trials into approved treatment for the NHS. Clinical trials can take anything between 15-20 years to get approved. Time myself & other parents just don't have. Duchenne UK are working hard to make clinical trials available for all Duchenne patients to participate in should they wish. All the money raised for Duchenne UK goes back into clinical trials. [/p][p]The best things about this cause, is that Will & I get to choose what clinical trials the money we raise goes into, which means you actually get to see where your money goes & see first hand how you are changing a little boys life."[/p][p]For the Duchenne Dash at home challenge I will be doing a mixture of running and walking 120 km in the six weeks starting on the 21st of May. By doing this I hope to raise some money and more awareness along with Lucy and other friends and family.[/p][p]Thanks again in advance.[/p][p]Sam xx[/p]

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Event

Personal Challenge Date

21 May 2021

Charity

Supporters


Jun 2, 2021

Beth

£20.00

plus £5.00 Gift Aid


May 16, 2021

Gavin Tyler

Well done darling. Love Mum and Dad xxx

£50.00

plus £12.50 Gift Aid


May 12, 2021

Sophie and Rob

£40.00

plus £10.00 Gift Aid

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