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Alex wall raised £2,225 from 81 supporters

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Closed 30/06/2019

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£2,225raised of £2,000 target by 81 supporters

    Weʼve raised £2,225 to Raise awareness for a super rare genetic syndrome called Myhre.

    Burghley
    Funded on Sunday, 30th June 2019

    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.

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    Story

    Myhre Syndrome

    Our daughter Maddie who is now 9 was born with health and development problems and has spent her young little life in and out of hospital. At 9 months she had surgery to fix her heart, she continued to be a mystery for all doctors in every profession and everytime she presented with another problem it was back to the hospital for her to be pricked and prodded. We joined genetic trials to see if there was an underlying cause for all Maddies difficulties and health issues. 4 years after joining the DDD trial we had a phone call to say we have a diagnosis, Maddie had just turned 9 at this point so we had gone a long 9 years without an answer. There was no relief at what the Genetic doctor told us as we were told that the syndrome maddie has is so rare there are only about 50 cases world wide and so information regarding the condition was limited. Its fair to say the information listed filled us with pure dread and everything felt like it was falling apart, knowing that in the future Maddie will need more heart surgery and other body parts can be effected and that joints on her body are super tight and causing her pain along with the constant ear infections. The future felt very uncertain, until we found a Facebook group for Myhre support with 112 members, we were welcomed into the group where we all share our own stories and help each other out with what to ask doctors for as currently our families are the ones writing the future and the paper work for new diagnosed children. We were so lucky to meet 6 other Myhre families is December where we got to share our highs and lows and just be amongst people who really understood. The children had a blast too. We realised as a group that we need to get the MYHRE name out there to bring awareness and who knows a cure so fundraising is the way forward. Maddie is currently doing well, she has had casts on her legs recently to try and release the muscles to help her walk better, heart surgery will be carried out in the coming years and we know what ever life throws at Maddie she will do what she always does and shows us that life is definitely for living in the super fast lane!

    Updates

    4

    • Alex wall7 months ago
      Alex wall

      Alex wall

      7 months ago
      Update from the Page owner

      Share this update to help us raise more

    • Alex wall7 months ago
      Alex wall

      Alex wall

      7 months ago

      4 DAYS to go!!!!!

      Share this update to help us raise more

    • Alex wall7 months ago
      Alex wall

      Alex wall

      7 months ago

      Thank you to everyone that has donated to our fundraiser. Alex has been training super hard ! Two weeks till the main event, please carry on donating, please let me know if you want to make a cash donation and i can put it on for you. Once again we are very grateful for all your support.xxxLove the Wall crew x

      Share this update to help us raise more

    10 months ago

    Alex wall started crowdfunding

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    Page last updated on: 5/16/2019 15.57

    Supporters

    81

    • Kathleen Robinson

      Kathleen Robinson

      May 16, 2019

      Thank you Kathleen for your donation we are very grateful x

      £10.00

    • Robbie, Ewan and Ewans grandad !

      Robbie, Ewan and Ewans grandad !

      May 16, 2019

      Thank you to all three of you for your very generous donations we are very grateful x

      £15.00

    • Aqua Heat Collection

      Aqua Heat Collection

      May 13, 2019

      Thank you to all who donated into the collection pot at aqua heat

      £120.00

    • Alec Osborn

      Alec Osborn

      May 10, 2019

      Good luck mate.

      £10.00

    • Wye Pave

      Wye Pave

      May 10, 2019

      £10.00

    • your design clothing

      your design clothing

      May 8, 2019

      £10.00

    • Gabbie Harvey Jones

      Gabbie Harvey Jones

      May 8, 2019

      £10.00

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    About Crowdfunding
    About the fundraiser
    Alex wall

    Alex wall

    Burghley

    Rat Race Full Mucker challenge 2019. I am taking part in the worlds largest obstacle race the Full Mucker in Burghley on May 11th. The challenge is a 20 mile course with 200 obstacles. I have started my training a few months back to set myself up for this amazing challenge.

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