We did it!
Alex wall raised £2,225 from 81 supporters
or
Start your own crowdfunding page
Closed 30/06/2019
Weʼve raised £2,225 to Raise awareness for a super rare genetic syndrome called Myhre.
- Funded on Sunday, 30th June 2019
Don't have time to donate right now?
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
4 years ago
Alex wall
4 years agoShare this update to help us raise more
4 years ago
Alex wall
4 years ago4 DAYS to go!!!!!
Share this update to help us raise more
4 years ago
Alex wall
4 years agoThank 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
Alex wall started crowdfunding
Leave a message of support
Supporters
81
Kathleen Robinson
May 16, 2019
Thank you Kathleen for your donation we are very grateful x
£10.00
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
May 13, 2019
Thank you to all who donated into the collection pot at aqua heat
£120.00
Alec Osborn
May 10, 2019
Good luck mate.
£10.00
Wye Pave
May 10, 2019
£10.00
your design clothing
May 8, 2019
£10.00
Gabbie Harvey Jones
May 8, 2019
£10.00
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.
Great people make things happen
Do you know anyone in need or maybe want to help a local community cause?
Create you own page and donʼt let that cause go unfunded!
About CrowdfundingAbout the fundraiser
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.