Weʼve raised £4,860 to help fund the care of Loui Legend, a little boy who was born with Treacher-Collins Syndrome.
- Brighton, UK
- Funded on Wednesday, 29th August 2018
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On June 1st 2018, The Learning People will be taking on the 3 peaks challenge for Loui Legend, a little boy with a rare 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. 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 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.
Loui requires 24hour care because if his tracheostomy was to come out or get blocked, it would be seconds before he would struggle to breathe, putting him in danger of brain damage or even worse. For this reason Loui has to have constant supervision and a trachy trained person with him at all times. For some of the care, like the daily tie change, Loui requires two people; sometimes even a third as he's a wriggly little boy! Loui requires carers to help with the night shifts but it is difficult to get as much support as he need, funded. Many of the treatments that Loui needs won't all be covered by the NHS, so we are fundraising to help with Loui's care.
We want to support Loui and his parents, as they battle to help him lead a normal life. We want to help pay for his long term care, shortfall of carers, equipment such as a more portable suction machine and for all his future medical care, operations and procedures which will be ongoing.
Updates appear here
LJ Stupple started crowdfunding
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Aug 27, 2018
Jun 13, 2018
Jun 11, 2018
Well done Guys!
Jun 11, 2018
Jun 11, 2018
Jun 7, 2018
Huge congrats for completing your great challenge, all for our little Loui
Jun 5, 2018
Well done Laura.
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