This 2-Year-Old Is Raising Awareness About His Rare Syndrome Through Modeling

Meet Louis Legend.

Louis Herriott-Heath, or Louis Legend as he is sometimes called, is a 2-year-old from Brighton, England with Treacher Collins syndrome (TCS), a rare condition which impacts the development of bones and tissues in the face, often resulting in facial deformities. 

Louis's mom, Karly Herriott, explained on a "Louis Legend" GoFundMe page that the condition was undiagnosed throughout her pregnancy. And while some cases are mild, her son's TCS is very severe and he will probably have to undergo surgeries and treatments for most of his life. She explains, "Because of the small size of his chin he has had to have a tracheostomy in order to breathe. He has very deformed, almost absent, ears and no middle ear, so he has to wear a bone anchored hearing aid (BAHA) on a headband to be able to hear. He will have to wear this until the age of about nine when his skull will be thick enough for the BAHA to be surgically fixed."

Despite his struggles, and the fact that he is only 2, Louis has found success as a model.

After Herriott posted a photo online of Loius wearing a T-shirt from the kid's clothing brand Lulas Dudes & Dolls, the photo received such as positive response that the company asked Louis to become a brand ambassador

The company has also made T-shirts to help raise money for the operations Louis needs.

The limited-edition T-shirt is fittingly called the "Legend Tee" and Louis can be seen proudly modeling it on the Lulas Dudes & Dolls website. Fifty percent of the profits from the T-shirt will go towards Louis's GoFundMe page.

The Argus reports that so far more than $45,000 has been raised through the various fundraising initiatives for Louis.

While funds to help Louis get treatment are important, Herriott told Popsugar that she also hopes that more clothing brands feature models like Louis, so more awareness can be raised. 

Besides Lulas Dudes & Dolls, there are already a number of other kids' clothing brands championing messages of inclusion and awareness.

Target Australia was praised for featuring a boy with Down syndrome in its recent ads and the UK brand Matalan, gained attention for featuring Lily Beddall, a 2-year-old with Down syndrome, in its latest campaign. 

Despite Treacher Collins syndrome being a rarer condition that affects approximately 1 in 50,000 people, there are others who are also helping to raise awareness about it. A man from the UK with TCS made headlines when he flew all the way to Australia to meet a 2-year-old with the same condition.

And another family of a girl who was born with severe Treacher Collins syndrome adopted a girl with the same condition from the Ukraine.

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