Treacher Collins Syndrome

By Hayley Pugh 

An adorable toddler born with a rare disfigurement condition has been selected to model for an online children’s clothes company.

Pic from Caters News

Two-year-old Loui, from Brighton, suffers from Treacher Collins Syndrome – a 1 in 50,000 condition which affects the development of the bones and tissues in his face.

Loui’s condition is so severe he has to have a tracheostomy in order to breathe and eats through a gastrostomy button which goes straight into his tummy.

The brave tot also has to wear a bone-anchored hearing aid, is unable to speak and needs 24-hour care.

But despite all this, Loui Heath Herriott, aptly named Loui Legend by his proud parents Karly, 29 and Luke, 30, still loves to pose for the camera and has now been selected to model for online children’s clothing company, Lulas Dudes & Dolls.

Pic from Caters News

The company spotted little Loui Legend after his mum, Karly Herriott, sent them a picture of him wearing one of their t-shirts.

After sharing the picture online and seeing sales of the t-shirt rocket they soon saw his potential and snapped him up as their latest modelling talent.

Lulas Dudes & Dolls have now even launched two new t-shirts in honour of Loui and to help fundraise for specialist operations, not available on the NHS, which he needs both now and in the future to improve his quality of life.

Karly, a part-time veterinary nurse, said: “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.

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

Pic from Caters News

“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’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.

“The care and responsibility involved in looking after his tracheostomy is phenomenal, if it was to come out or get blocked it would be seconds before he would struggle to breathe.

Pic from Caters News 

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

“Our aim at the moment is to finish his palate surgery so he can eventually have the tracheostomy removed.

“Once that is out he will be able to go to nursery and go swimming and start learning how to speak. He currently communicates with us through sign language though – he’s as bright as a button.

Pic from Caters News

“After initial surgeries that will improve his quality of life, it would be nice to have the fundraising there for him to have the choice in whether he wants any further surgeries or any more cosmetic ones when he’s older.

“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.

Pic from Caters News 

“If anything the majority of people we come across are lovely and the amount of people willing to give up their time and money to help is just amazing.”

To help Loui please visit here.