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Emma-Jayne Ashley

Emma-Jayne Ashley is crowdfunding

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£275raised of £5,000 target by 13 supporters

Weʼre raising £5,000 to help fund research, provide family support and raise awareness of Myotonic Dystrophy.This devastating degenerative condition affects our son

What is crowdfunding?

Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered nonprofit.

The page owner is responsible for the distribution of funds raised.

Story

Welcome to Pete and Emma's Crazy Challenge page - take 2!

Last year we were planning to climb the Yorkshire 3 Peaks, and do the Great North Run, to raise funds. Sadly, Dregan and Xanders dad, Dominic, passed away from Myotonic Dystrophy a few weeks before we were due to do the climb, so it was postponed. We did do the GNR and I said never again...then promptly entered the ballot.....

We have decided to try again - this year we do 3 Peaks on 17th Aug, and GNR on 9th Sept. We are joining the fundraising for both events, and for both of us, to try and raise one BIG amount instead of 4 smaller amounts.

It is Crazy, because this year has not been an easy one, on our own health as well as the difficulties which comes from the condition Dregan has, but we have decided to literally jump in with both feet and make this an EPIC CHALLENGE.

3 Mountains and a half a marathon in one month....why would anyone do that?

We are doing it because our son Dregan has Congenital Myotonic Dystrophy. He is 19 years old, and sometimes just climbing to the top of our stairs at home feels like a marathon to him. Our muscles are still working, so we want to use them to help raise awareness of muscle disease. Dregan's respiratory muscles are deteriorating and he is on night time ventilation to help remove poisonous Carbon Dioxide from his lungs when he sleeps - every breath we take on this journey is for him and his 'DM Family'.

We are doing these challenges with Muscular Dystrophy UK and have pledged a minimum amount for research via MDUK and The Congenital Myotonic Dystrophy Fight Fund. We are aiming to donate the same amount to Cure DM to enable continuation of DM Specific family support - and Family meet ups and gatherings, and also fund research in our own name. These get togethers and support is so important for families living with this disease every day!

This is not going to be easy for us - we have very little spare time away from caring duties to be able to train for such a challenge, and our health isn't always at its best - but we are passionate about the cause and dedicated to find a treatment to save Dregans life, to help all our friends (who we consider family) to find treatments which will help. There isn't anything we can do to stop what is happening to Dregan right now - but this is something we can do to keep optimistic and TRY for the future!

Myotonic Dystrophy is a progressive, degenerative neuromuscular disorder which currently has no treatments or cure. It is Genetic and dominant in transmission, which means that when a person is diagnosed, whole families are also diagnosed. It worsens with each generation. It affects every part of the body, subsequently leading to respiration and cardiac issues which can be fatal. Congenital means symptoms are from birth, and our children are most severely affected. It is life limiting, but as knowledge is improving, so is our ability to care and understand the condition.

THANK YOU for your support. If you can't donate - please share and help spread awareness.

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Updates

2

  • Emma-Jayne Ashley13 days ago
    Emma-Jayne Ashley

    Emma-Jayne Ashley

    13 days ago

    11 mile walk around Chatsworth - it was very hot. That's almost half of the 3 Peaks challenge which is in just 2 weeks!! PLEASE share and help us fund research via MDUK, provide day to day support and send more kids to Butlins next year. THANK YOU

    Share this update to help us raise more

  • Emma-Jayne Ashley1 month ago
    Emma-Jayne Ashley

    Emma-Jayne Ashley

    1 month ago

    6.5mile run this morning, which is 10.5km. Heart rate seemed to peak at 192..... that's normal right? Thanks for the shares and donations. Only 4 weeks and our 1st challenge will be complete, we appreciate the support! X

    Update from the Page owner

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1 month ago

Emma-Jayne Ashley started crowdfunding

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Page last updated on: 8/17/2019 09.52

Supporters

13

  • Anonymous

    Anonymous

    Aug 17, 2019

    Such dedication deserves support. The best of luck to you both!

    £20.00

  • Helen Steer

    Helen Steer

    Aug 17, 2019

    I'm so proud of you both. Xxxxx

    £20.00

  • tracy

    tracy

    Aug 16, 2019

    tracy and ashley wareham

    £5.00

  • Anonymous

    Anonymous

    Aug 16, 2019

    £10.00

  • Fiona Anderson

    Fiona Anderson

    Aug 15, 2019

    I'm sorry I can't donate more at this time but know I wholeheartedly support you and your family's journey with DM. Will be cheering you on from Bolton xx

  • Anonymous

    Anonymous

    Aug 15, 2019

    Good luck! Hope you don’t get too wet! Phil, Amy, Harry, Evie & Ollie x

  • Dinah Ashley

    Dinah Ashley

    Aug 15, 2019

    You can do it!🤗 (don’t forget your☂️)😁😎xxx

    £50.00

Emma-Jayne Ashley

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About the fundraiser
Emma-Jayne Ashley

Emma-Jayne Ashley

North Lincs

Our aim is to do everything we can to raise awareness of the rare condition, Congenital Myotonic Dystrophy, which my son has. Raising funds for research and family support for Cure DM and MDUK. We will continue to fight and make a difference to peoples lives, doing what we can.

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