This year we have decided to run the Brighton half marathon again. We are busy training hard as we want to raise as much money as possible for a lovely little boy, Loui Legend.
Loui was born with a life changing condition, undetected until birth, called Treacher-Collins Syndrome which affects the development of the bones and the tissues of the face.
Please read a few words from Loui's mum Karly and you will see why we found it very easy to choose who we wanted to run for this year.
Here is some information from Karly, Loui's mum:
Loui was born with a life changing condition (crazily undetected till his birth) called Treacher-Collins Syndrome which affects the development of the bones and the tissues of the face. It varies dramatically in severity and Loui unfortunately has a severe case meaning because of his receded chin he needs a tracheostomy to breathe, gastrostomy in his tummy to feed and two bone anchored hearing aids (BAHAs) on a band around his head to hear. He has no middle or outer ears and underdeveloped cheekbones. He had what 4 different doctors in this country called an 'inoperable cleft palate'.
The tracheostomy itself requires 24hour care and needs frequent suctioning of secretions so that Loui doesn't affectively drown. When he was newborn this needed suctioning every 2-5minutes so you can imagine how incredibly full on this was. Nowadays he is suctioned about every 10minutes which is still incredibly labour intensive but better than it was in the beginning. Loui has to have somebody by his side 24/7 to ensure he doesn't pull the tracheostomy out as without it he cannot breathe. We have had several emergency situations when Loui turned blue and we feared we were close to losing him. Myself and my mum are both trained in CPR and all Loui's medical needs.
Loui is fed a blended diet made by me in syringes through his gastrostomy every 2 hours 6 x a day and then 200mls milk through a pump every 4 hours 3 x a night to top the calories up.
Loui has moderate hearing loss without his hearing aids and with them he has low level hearing loss so picks most things up but struggles with higher pitched sounds like ssh and sss so for example may mistake fish with kiss.
Loui has already had 7 anaesthetics in his little life and has lots more gruelling surgery and procedures to go through in order to have his palate repaired and his jaw brought forward to enable him to have his tracheostomy removed. A lot of these procedures cannot be done till he is older, some of them cannot be funded for by the NHS and some of them need to be done in America so we are fundraising indefinitely to get him all the procedures and operations he needs in his life.
Despite all our little Loui goes through, we feel we have been blessed with his brilliant, loveable and funny character and he manages to win the hearts of whoever gets to meet him. Since he was 4 months old when we announced him to the world we have managed to muster up his very own 'Loui's army' and he has quite a following on his own Facebook group (Search 'Loui Legend' in the search bar and it will come up.) I felt updating his own page at least a few times a week was the least I could do to thank all the many people who had supported us so far and Loui's cause has gone from strength to strength with his cheeky and cute persona winning so many people over. (I'm also a biased mum I know but he goes through so much with such unparalleled grace for his age that I feel he is so deserving of this level of adoration.)
The link to his Facebook page is:
And the link to his go fund me page is:
Where you will be able to find out more about him.
The cost of all his required procedures is silly amounts and we have done so well so far but this is still a drop in the ocean of what we have to come that needs funding so we are forever in debt to anybody willing to do anything to help.
Thankyou very much in advance.
Karly Herriott, mother and advocate for my little superhero Loui Legend!
So please everyone dig deep and see what we can raise for lovely, inspirational Loui Legend.
Ginnie & Kevin
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