Weʼve raised £210 to To raise much needed money for Loui Legend for his numerous operations, and raise awareness of Treacher Collins Syndrome.
- Brighton, United Kingdom
- Funded on Friday, 22nd September 2017
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.
This campaign is for a little lad, Loui Legend who made his shocking arrival into the world on the 8th February 2015 at 12:48am weighing 7lb14.5.
Undiagnosed throughout the pregnancy, there had been a completely random mutation of a gene at conception which unfortunately caused Loui to be born with a condition called Treacher-Collins Syndrome.
Treacher-Collins Syndrome is very cruel and affects the development of the bones and other tissues of the face. The signs and symptoms of this disorder vary greatly, ranging from almost unnoticeable to severe.
Loui's case is unfortunately very severe so because of the small size of his chin he has had to have a tracheostomy in order to breathe. He has very deformed almost absent ears and no middle ear, so he has to wear a bone anchored hearing aid (BAHA) on a headband to be able to hear. He will have to wear this till the age of about 9 when his skull will be thick enough for the BAHA to be surgically fixed. As part of the syndrome he also has a cleft palate which makes it impossible for him to suck so he is fed through a naso-gastric feeding tube. Loui has downward slanting eyes as the bones of the eye sockets are so under-developed and he has very small cheekbones. He has a lifetime of hospital trips, procedures and operations yet most of the corrective surgery cannot be done until he is an adult and fully grown.
A bit about us.
We are a bunch of intrepid adventurers of various ages and fitness levels.
We have decided to take on a challenge in aid of Loui Legend for two reasons, one to raise much needed money for his numerous operations, and the other to help raise awareness of Treacher Collins Syndrome.
We have entered a race called Ragnar which will see us run in relays from Maidstone to Brighton covering a distance of 165 miles between us and each running approximately 16 miles.
*Loui has a page on Facebook with info about him, just seach for 'Loui Legend' and click the 'groups' tab.
Updates appear here
Nick Poyner started crowdfunding
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Sep 22, 2017
Sep 7, 2017
Mind that hamstring 😜
Sep 7, 2017
Aug 11, 2017
Jul 25, 2017
Don't drop off a cliff! Good luck everyone
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About the fundraiser
Brighton, United Kingdom
I have supported Loui Legend with a couple of past events and this sees me take on the next challenge for the little lad. Loui is such a great little boy who always seems to be smiling no matter what.