Our site needs cookies

We need cookies to help you sign in, create a fundraising page and donate. If you want to fundraise or donate on our site, you will need to turn on cookies How to turn on cookies.

It looks like you are trying to access a charity account.

Please click here for the charity sign in page. If you are not trying to access a charity account, please contact us.

Duchenne Dash - 2019

1 team member

Challenge complete

Fundraising for this challenge has ended so we're no longer accepting donations. Thanks to everyone who supported this challenge.

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

Team story

[p]Duchenne Muscular Dystrophy. 18 months ago these are words we had never heard of. A year ago these are words that filled our every thought but we could hardly bear to say. And now? These are words that have become part of our family life, part of our everyday vocabulary, words that we use as often as we use the boys' names. [/p][p]Most of you will already know our story: in October 2017, our youngest son, Oscar, was diagnosed with the devastating and fatal muscle wasting condition that is Duchenne Muscular Dystrophy. The diagnosis came out of nowhere and, like a hand grenade, landed on our family leaving us to grapple with the utter devastation left behind. We spent the initial months picking ourselves up, putting one foot in front of the other, just existing really, knowing that our lives would never be the same again but not knowing how we could possibly begin to deal with it. [/p][p]Quite early on we came across the charity, Duchenne UK. It was my friend, Jane, who, a few months post diagnosis, alerted us to the Duchenne Dash. In hindsight, signing up to this utterly ridiculous 200 mile cycling challenge at a time when we barely had the energy to get up in the morning, get to work and look after the boys, seems like a rather foolish thing to have done. However, for both me and Olly the Dash, and the charity, became our life line. The Dash gave us a way of telling you all our story, in our own words. But it also gave us the chance to do something positive and it gave us hope. Because amongst all of the grief and devastation left by the Duchenne diagnosis, we both knew that we had to do something to fight for our son. [/p][p]We managed to raise over £33,000 last year from sponsorship for the ride– purely through donations from friends, family, colleagues and kind people who we had never even met – and we have since added to this through events some of our friends have done so that, in 2018, we raised close to £40,000 for Duchenne UK. We will never be able to thank you all enough for the support you have provided to us – both financially and otherwise. Your generosity really did keep us going through those dark months. [/p][p]This year, we are doing the ride again. This time, there are a team of 7 of us riding for Team Oscar (including my wonderful friend Jane who alerted us to it in the first place). And, not content with riding a mere 200 miles in 24 hours, Olly is taking on the ultimate challenge of the Dash Max - a gruelling 1,500 km with 16,000m (yes, 16km!) of climbing from London to Biarritz which starts with the 24 hour Dash. We are all committed to raising as much money as we can because if we want life changing treatments to come in time for Oscar, we really have no time to waste. And we really are getting closer to those treatments becoming a reality. Gene therapy gives us the most hope for a life changing treatment – there are currently human clinical trials in progress with really positive initial results. But there are other treatments on the horizon which may be able to help our boys, prolong their lives and the quality of their lives and buy them time whilst the gene therapies are being progressed. Duchenne UK plays a vital role in funding and pushing these treatments forward – run by 2 fiercely committed and passionate Duchenne mums, it is the largest funder of Duchenne research in the UK and is committed to accelerating that research – it really is making a difference. You can read more about Duchenne UK's contribution in the 2018 impact report [url=http://www.duchenneuk.org/our-impact]www.duchenneuk.org/our-impact[/url]. [/p][p]Olly and I hate asking you for money again. You were all so very generous last year in your support and, in usual circumstances, we would not dream of asking for even more sponsorship from you. But Olly and I are not facing usual circumstances. Oscar is getting weaker. As he gets older and should be gaining more and more independence we watch our son needing our help and support more and more each day. We watch him struggle to get up off the floor when he falls over, we watch him use every last bit of his strength to climb a few stairs and we watch him desperately trying to keep up with his friends. If we do not accelerate treatments, over the next 10 years we will watch our son lose the ability to walk, to feed himself, to write his name, to hug us and eventually we will face the prospect of watching his heart and lungs fail him. We have to act and we have to act now. We have to do everything we can to give our son a chance. [/p][p]I am quite conscious that a lot of what we say on this page, and talk about, is about Olly and I – about our feelings and our devastation. Of course, whilst this is happening to our whole family, this is really about our little boy – our beautiful, loving, happy boy, Oscar. Oscar knows he has Duchenne and he lives with the current physical limitations that this brings. But he does not yet fully understand the disease - because he is only 8, because we cannot bear to have to tell him about the cruel reality of what might lie ahead. But eventually he will ask more difficult questions, eventually he will think about using google, eventually we will need to answer those questions. Our wish for Oscar is that, when that day arrives, when he asks us what the future holds for him, we are able to talk to him about treatments that are available, within our reach, treatments which will help him and give him hope for his future. Please help us give hope to Oscar. We are so very very grateful to you for any support you are able to give us is - it really is very much appreciated. [/p][p] [/p]

Share their story

Event

Duchenne Dash

Duchenne Dash

07 Jun 2019

Charity

Supporters

Jul 16, 2019

Anonymous

RPC sweep stake

£98.00

Jun 28, 2019

Dan

I bumped into Olly at Bordeaux Airport on his return from this trip. He was somehow looking as relaxed and well rested as ever! An amazing effort for an impossibly important cause. Well done all. All the very best with future fundraising.

£50.00 plus £12.50 Gift Aid

Jun 20, 2019

Ashville

Olly Well done for undertaking such a challenge, a great effort, our very best wishes to your whole family and Oscar for this charity, best wishes Ashville team Bristol

Jun 16, 2019

Jeremy and Rhiannon

£100.00 plus £25.00 Gift Aid

Jun 16, 2019

Aly

A bit extra for Olly’s fantastic achievement x

£50.00 plus £12.50 Gift Aid

Jun 15, 2019

Dan and Cara

Tremendous effort guys, well done

£50.00 plus £12.50 Gift Aid

Jun 15, 2019

Chris Smedley

Little brother, many, many congratulations on this amazing achievement. Fantastic to be part of such a great endeavour with an amazing charity.

£500.00 plus £125.00 Gift Aid

Jun 14, 2019

Eira H

Go Olly ! Go! Go! Go!

£15.00 plus £3.75 Gift Aid

Jun 14, 2019

Anonymous

£30.00 plus £7.50 Gift Aid

Jun 14, 2019

Joe Bryant

Amazing achievement Sara and team - well done for sticking at it despite the weather. Apologies for the lateness of our donation - we have had a few challenges of our own recently as I know you know. Always thinking of you all. Joe xxx

Sara and Olly Smedley

Sara and Olly Smedley