Brave toddler with rare facial disfigurement to become a model

06 May 2017

Despite his disability and continuous health struggles, little Loui just loves the camera.

Even underneath the features caused by a rare disfigurement condition, two-year-old Loui Heath Herriott’s absolute cuteness still shines through. And now the tot, from Brighton, in England, is going to model for an online children’s clothes company.

Loui Legend, as he was fittingly dubbed by his parents, Luke (30) and Karly (29) Herriott, suffers from Treacher Collins Syndrome – a condition that affects one in 50 000 kids and impacts the development of the bones and tissues in his face.

Loui's condition is so severe he eats through a gastrostomy button which goes straight into his tummy.

"Because of the small size of his chin he has had to have a tracheostomy in order to breathe,” says Karly.

Read more: ‘Alien boy’ dramatically transformed in facial surgery paid for by total strangers

"The care and responsibility involved in looking after his tracheostomy are phenomenal. If it were to come out or get blocked it would be seconds before he would struggle to breathe.

"Someone even has to watch him sleep in case it comes out. Within seconds he goes pale, it's really scary.”

Karly Herriott, 29 with her  two-year-old son Loui Heath Herriott. Karly Herriott, 29 with her two-year-old son Loui Heath Herriott.

The brave tot also has to wear a bone-anchored hearing aid, is unable to speak and needs 24-hour care. Despite his disability and continuous health struggles, little Loui is quite the poser. Now, his love of being in front of the camera has resulted in his being chosen to strut his stuff for Lula's Dudes & Dolls. "I just sent in a picture of him wearing one of their tops and they contacted me asking if they could put it on their Instagram page,” explains the mother, who’s a part-time veterinary nurse.

"The picture received hundreds of more likes than ever before and sales increased.

Read more: ‘I’ll never forgive him’: man disfigured by complete stranger in excruciating acid attack

"When they approached me to ask if he could model for them I was quite touched. It's a big thing for him and also in raising awareness of Treacher Collins syndrome.”

Loui is unable to speak and communicates through sign language. But, says proud mom Karly, he’s ‘as bright as a button’.

Unlike what one would expect, people have surprisingly been respectful of Loui's condition and spared the family of hurtful 'what-is-that' stares.

"When we're walking down the street people do often take a second look but not to be horrible. We have had some nasty comments but I have learnt to block them out,” says Karly.

"If anything the majority of people we come across are lovely and a number of people willing to give up their time and money to help are just amazing."


Find Love!