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Emma-Jayne Ashley raised £570 from 24 supporters

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Closed 06/10/2018

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£570raised of £1,000 target by 24 supporters

    Weʼve raised £570 to provide family support, arrange family gatherings and fund vital research into Myotonic Dystrophy.

    United Kingdom
    Funded on Saturday, 6th October 2018

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    Story

    Welcome to Pete and Emma's Crazy Challenge page! Crazy because we have decided to literally jump in with both feet and not only run The Great North Run (Half Marathon) in September - but we have agreed to do The Yorkshire 3 Peak Challenge in AUGUST! 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 18 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 of £700 for research via The Congenital Myotonic Dystrophy Fight Fund. We are aiming to donate the same amount to Cure DM CIC to enable continuation of DM Specific family support - and Family meet ups and gatherings, which is so important for families living with this disease every day! If we reach our target we will be splitting the fundraising 50/50 for research and support!

    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.

    Updates

    3

    • Emma-Jayne Ashley3 months ago
      Emma-Jayne Ashley

      Emma-Jayne Ashley

      3 months ago

      Just over 1 week until Pete and I run the great north half marathon, alongside our friends Ray and Cecilia. We were joining this with the Yorkshire 3 peaks as an epic challenge, but that has now been deferred until March 2019. 50% of donations received from our GNR fundraising will go to family support and gatherings via Cure DM CIC and 50% to fund research via Congenital Myotonic Dystrophy Fight Fund (family fund within Muscular Dystrophy UK) We truly appreciate your support - this is quite a challenge and I have to say, I am not ready :-(

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    • Emma-Jayne Ashley4 months ago
      Emma-Jayne Ashley

      Emma-Jayne Ashley

      4 months ago

      Today we should be getting ready for our 3 Peaks challenge, and while we are not up to it under current circumstances - we WILL do it next year, with an even bigger team! I am quite sad to miss it but I have to accept when I need to step back. We are still doing the Great North Run in just FOUR weeks. Pete went out last night for a run so today I will go out and try to make friends with my running shoes again. Thank you for all your support. x

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    • Emma-Jayne Ashley5 months ago
      Emma-Jayne Ashley

      Emma-Jayne Ashley

      5 months ago

      We will not be doing the 3 peak challenge next week. Dregan and Xander's father Dominic died suddenly at the weekend and we simply cant face a challenge like this at this time. We still intend to run the Half Marathon and may do the 3 peaks next year, and will be even more dedicated to supporting families living with this disease, and funding research to try and find a treatment, if it is possible to be more dedicated! We appreciate your support, and will continue to fight for our loved ones - but for now, we need time. x x

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    5 months ago

    Emma-Jayne Ashley started crowdfunding

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    Page last updated on: 9/13/2018 2:56 PM

    Supporters

    24

    • Dinah Ashley

      Dinah Ashley

      Sep 13, 2018

      Well done Emma, Pete and Ray🎉🎉🎉 It was good to be part of your Great North Run day😀😎xx

      £30.00

    • Julz M

      Julz M

      Sep 11, 2018

      For Dregan ❤

      £10.00

    • Jane Jarman

      Jane Jarman

      Sep 11, 2018

      <3

      £10.00

    • Sarah Mitchell-Innes

      Sarah Mitchell-Innes

      Sep 10, 2018

      Well done Emma and Pete, you are superstars x

      £10.00

    • Karl Kibble

      Karl Kibble

      Sep 10, 2018

      Your dedication to your cause is amazing and you all are amazing from all of us x

      £20.00

    • a thirlaway

      a thirlaway

      Sep 10, 2018

      Well done, love you loads From Chris and Ali xx

      £20.00

    • Jan clift williams

      Jan clift williams

      Sep 10, 2018

      Well done to you both xx

      £20.00

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    About Crowdfunding
    About the fundraiser
    Emma-Jayne Ashley

    Emma-Jayne Ashley

    United Kingdom

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