Adorable tot born with rare disfigurement is the new face of kids’ clothing brand after his photo went viral
Loui Heath Herriott, two, was born with Treacher-Collins syndrome, which causes abnormal growth of his cheekbones, jaw and eye sockets
A TODDLER born with a rare facial disfigurement is set to model a new range of kids clothes after being spotted wearing one of their T-shirts.
Little Loui Heath Herriott suffers from Treacher Collins syndrome - a condition affecting just one in 50,000 people.
It affects the development of the bones and tissues in his face.
Loui's condition is so severe he had to have a tracheostomy, where a small cut is made in the windpipe to allow a breathing tube to be inserted.
He must also eat through a using a gastrostomy button, which lets his mum feed him food straight into this tummy.
The brave two-year-old also wears a bone-anchored hearing aid, is unable to speak and needs round the clock care.
But, in spite of his daily battle, Loui, from Brighton, is a happy little boy, who loves to pose for the camera, mum Karly, 29, revealed.
And it's that personality trait that's helped him secure his new adventure, as a model.
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The tot has been selected to model for kids' clothing company, Lulas Dudes & Dolls.
The company spotted little Loui legend, as his parents have nicknamed him, after his mum sent them a picture of him wearing one of their T-shirts.
After sharing the photo online, the company saw sales of the T-shirt rocket, spotted his potential and snapped him up as their latest modelling talent.
And they have even launched two new T-shirts in Loui's honour, to help raise money for specialist ops not available on the NHS, which he needs 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.
"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."
The 29-year-old explained her son's case is very severe.
WHAT IS TREACHER-COLLINS SYNDROME?
TREACHER-Collins syndrome affects the bones and face, and is present from birth.
Early in pregnancy the cheekbones, jaw and eye sockets fail to develop properly, often causing a baby to have drooping eyes and a small jaw.
It is a genetic condition caused by a mutation or change in a specific gene.
Scientists have identified three genes that are affected - and all affect the development of bone and tissues.
The symptoms are very variable from sufferer to sufferer, ranging from mild to severe.
Kids with Treacher-Collins syndrome tend to have a characteristic appearance, due to the fact their cheekbones, jaw and eye sockets don't form properly.
Their jaws tend to be very small, and/or underdeveloped.
They will often suffer breathing problems, as well as difficulties feeding.
Some kids will have a cleft palate, while in other severe cases some children will be missing ears.
Because of his small chin he has had to have a breathing tube inserted, and this takes a huge amount of care.
"The responsibility involved in looking after his tracheostomy is phenomenal," she revealed.
"If it was 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, who looks after Loui with his dad Luke, 30, said their aim is for Loui to have palate surgery, which will enable doctors to remove his tracheostomy.
Once it is out, the toddler will be able to go to nursery, swimming and start to learn how to speak.
He currently communicates through sign language and Karly said he's "as bright as a button".
She said her son's condition does draw stares and nasty remarks from strangers.
"When we're walking down the street people do often take a second look, but not to be horrible," she said.
"We have had some nasty comments but I have learned to block them out.
"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 support Loui, visit his
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