Loui Legend’s Just Giving

By   /  06/12/2018  /  Comments Off on Loui Legend’s Just Giving

Loui’s Just Giving Page

This is Loui.

He is known as Loui Legend because he is a legend!

Loui is 3 Years old. Loui was born with a very rare condition called Treacher Collins Syndrome which affects 1 in 50,000 babies born.

Treacher Collins Syndrome 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 on a band around his head to hear. He has no middle or outer ears and underdeveloped cheekbones.

Loui also had what 4 different NHS doctors in this country called an ‘inoperable cleft palate’ Karly and Luke (louis Mum and Dad) did not accept this and they tracked down a surgeon who has been operating on Louis’ palate with great success.

Because Loui has a tracheostomy he requires itself 24hour care and the tracheostomy needs to be cleared every 10-30 minutes 24 hours a day! Having a tracheostomy which is a direct route down into his lungs and bypasses his voicebox means Loui cannot speak, eat, drink, play in sand or water or ever be left alone.

In his short little life Loui has already had 10 anaesthetics but this is just the start as he has lots more gruelling surgery and procedures to go through in order to have his palate completely repaired and his jaw brought forward to enable him to have his tracheostomy removed. These are just the surgeries to better his quality of life and are not cosmetic. A lot of these procedures cannot be done till he is older, some of them cannot be funded for or carried out by the NHS and some of them need to be done in America. Loui’s unique and intricate anatomy means there is simply no room for trial and error. This is why Karly and Luke are tirelessly fundraising for the far more advanced surgery in America that has had 100% success rate in getting the tracheostomy out of the severe TCS cases. The surgery is complicated and expensive.

Despite all Loui goes through, Karly and Luke say they feel blessed with his brilliant, loveable and funny character and he wins the hearts of whoever gets to meet him. Louis’ family are very grateful for all of the incredible support they have had with their fundraising but they still need more.

This Christmas, Patcham High School will be donating all of the money they raise from the Turkey fun run, Carols in the village and will also show Louis’ film at the Christmas concert and ask for donations towards his fund.

Karly is one of our ex-students. She is an amazing Mum and we are proud and privileged to have met her and Loui . We are sure that Loui will steal your heart as he has ours and you will give generously this Christmas to help Loui do some of the ordinary things that all 3 year olds should be able to do.


If you would like to follow Loui and his progress you can do so with the links to his social media below.


GoFundMe Page

Instagram – @loui.legend

Thank you