HE MAY be only two years old but little Loui Heath Herriott is already making a name for himself.

The youngster is becoming a familiar sight after being picked to model for an online children’s charity.

Loui also has his own dedicated Facebook page where his parents Karly and Luke provide regular updates about what he is doing.

Loui, from Lancing, was born with the rare genetic condition Treacher Collins syndrome, which affects the development of the bones and tissues of his face.

His condition is so severe he has to be fed through a tube and has another tube inserted into his windpipe so he can breathe.

The youngster also has to wear a bone-anchored hearing aid on a headband, is unable to speak and requires 24 hour care.

He has been under a general anaesthetic eight times during his young life and faces the prospect of further surgery in the future.

However despite his problems, mum Karly, 29, says the youngster has a huge personality and a real sense of humour.

She said: “His condition does not affect him mentally and he runs around and enjoys things just like any other toddler.

We are teaching him sign language and he has already picked up more than 200 signs.

“He has a lot of cheeky cuteness, loves drawings and gets excited whenever Thomas the Tank Engine comes on.”

Karly and Luke, 30, had never heard about Treacher Collins until Loui was born but by necessity they have become experts on the subject.

Karly said: “Some people with the condition have minor problems but unfortunately Loui is at the other end of the scale and a very severe case.”

Loui was born with a cleft palate so severe his doctors said it was inoperable.

He also needs surgery to help reshape his jaw, which could eventually mean he will no longer need the tube down his windpipe, known as a tracheostomy.

His parents got four different opinions from other medics in the UK who said the same about the cleft palate so they looked further afield for information.

They eventually got in contact with a children’s hospital in Seattle where medics said they could take a look at his palate and eventually do the jaw surgery.

A fundraising campaign to cover the cost of the surgery and travel was launched, with The Argus Appeal also showing its support by making a donation.

Fortunately Karly and Luke found a specialist in London willing to do the cleft palate surgery and the first of three operations was carried out earlier this year.

Karly said: “The surgeon said it was the most severe case he had ever seen in all his 50 years but the operation worked.

“It was such a fantastic relief and Loui was such a trouper through it all. He has more surgery to come but we are hopeful.”

Loui’s parents still have to pay for the treatment, although the private doctor has waived his fees.

They also hope to take him to the US when he is older so he can have the operation carried out on his jaw and so the fundraising is continuing.

Once the tracheostomy is out, the toddler will be able to go to nursery, enjoy swimming and start to learn how to speak.

In the meantime the family are focusing on giving Loui as fun and as normal a life as possible.

Karly said: “He obviously needs a great deal of care. The tracheostomy needs suctioning about every ten to 20 or 30 minutes and we have to constantly watch him so it doesn’t get pulled out,

“We have someone to come in and provide care for him overnight but it is very hard going.

“I have to prepare meals for him every day which are blended so he can have them. Thankfully we have a huge amount of support from my mum Carol, who has been absolutely amazing.”

Having a child who looks very different means Karly has had to become used to people staring when they are out and about.

She said: “People are really nice when they meet us and Loui has got a lot of love around him.

“There are some who might stare rudely for a bit too long and there have been some horrible comments in the past but we know how to block it out.

“Other children sometimes say things and can be a bit blunt but we have learned how to deal with this.

“Loui is too young at the moment but I do worry a little bit about when he gets older and realises more about what is going on.

“I think he knows he is different.

“He is very observant and can see other children talking and eating which he can’t do.

“I can see him sometimes looking at them.

“We’ll just have to make sure we are all there for him and support him.”

One way Loui has captured attention in a positive way is to have become a model for online clothing company Lulas Dudes and Dolls.

Karly said: “I sent in a picture of him wearing one of their t-shirts and they asked if they could put it online.

“The picture ended up with hundreds of likes and increased sales as well.

“The company asked if they could use him as a model and I was happy to agree.

“They have also designed more t-shirts which are helping to fundraise for Loui’s operations.

“We were delighted with how successful this has all been.

It is a major breakthrough for children with differences like Loui. “It breaks the taboo and also helps raise more awareness of Treacher Collins, which is obviously a very good thing.

“We have a lot of people who like our Facebook page and I like to keep things updated as much as possible.

“It is quite sweet because we get people coming up to him now because they recognise him.

“He is a very special boy and very much loved.”

People can support Loui’s fundraising by visiting gofundme.com/louilegend.