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£450raised of £1,000 target by 16 supporters

Weʼre raising £1,000 to Raise awareness for a super rare genetic syndrome called Myhre.

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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!

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Alex wall

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    8 days ago

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    Page last updated on: 1/19/2019 20.15



    • Rowan


      Jan 19, 2019

      Not a lot mate but all the best x


    • Anonymous


      Jan 19, 2019


    • Stef Simmons

      Stef Simmons

      Jan 19, 2019

      Good luck in fundraising and spreading awareness of this condition Alex you’re a superstar.


    • Anonymous


      Jan 17, 2019

    • Samantha James

      Samantha James

      Jan 16, 2019

      Maddie is a true inspiration and so are you guys as her very supportive family. Good luck Alex, be careful of that knee. Love The James'


    • Jess Powell

      Jess Powell

      Jan 16, 2019

      Maddie truly is an inspiration , Alex you will smash this !


    • Maz Smith

      Maz Smith

      Jan 14, 2019

      The best reason to endure the race pain! Good Luck!


    Alex wall

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    About the fundraiser
    Alex wall

    Alex wall


    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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