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£280raised of £2,000 target by 9 supporters

Weʼre raising £2,000 to provide family support, arrange family gatherings and fund vital research into Myotonic Dystrophy.

United Kingdom

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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.

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Updates

2

  • Emma-Jayne Ashley9 days ago
    Emma-Jayne Ashley

    Emma-Jayne Ashley

    9 days 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 Ashley18 days ago
    Emma-Jayne Ashley

    Emma-Jayne Ashley

    18 days 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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2 months ago

Emma-Jayne Ashley started crowdfunding

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Page last updated on: 8/18/2018 7:52 PM

Supporters

9

  • John Hodgetts

    John Hodgetts

    Aug 18, 2018

    Good luck Emma x

    £20.00

  • Sandra Davis

    Sandra Davis

    Aug 17, 2018

    Well done, you star.

    £10.00

  • Eileen Topham

    Eileen Topham

    Aug 2, 2018

    £30.00

  • Emma Wellens

    Emma Wellens

    Aug 2, 2018

    Lots of love and hugs to you, thank you for this I hope we can help others xxx

    £30.00

  • Lindsay Bennett

    Lindsay Bennett

    Aug 1, 2018

    You're doing amazing things xxx

    £30.00

  • SARAH HOBBS

    SARAH HOBBS

    Jul 28, 2018

    Good Luck. x

    £20.00

  • Gaynor Newman

    Gaynor Newman

    Jul 23, 2018

    Your family are amazing, hope you reach your goal and more!

    £20.00

Emma-Jayne Ashley

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About the fundraiser
Emma-Jayne Ashley

Emma-Jayne Ashley

United Kingdom

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