Have you ever heard of Treacher Collind syndrome before? Unless you know someone with this genetic condition, it’s likely that you haven’t.
But that should change. Here’s why.
According to the U.S. National Library of Medicine, 1 in every 50,000 people will develop or be born with TCS. The condition is best known for changing the way facial bone and tissues develop.
TCS most frequently alters the structure of cheekbones, jaws, and chins in particular.
While it changes the way a face develops, it has no bearing on a child’s intelligence.
So, when it comes to getting bullied, these kids are aware of exactly what is going on.
Jono Lancaster is probably the most famous person with Treacher Collins syndrome.
During the 2015 NORD Breakthrough Summit, Jono explained, “I was born with a genetic condition that affects my facial features. I have no cheekbones, and so my eyes dip down. I love my little ears, they don’t get cold at night. But I do need hearing aids.
Today, Jono has tens of thousands of followers across his social media platforms, but he’s also had an extremely challenging life.
Thirty-six hours after he was born, Jono was given up by his biological parents because of the way he looked. He explained:
“When I was born, [my birth parents] were in total shock. I was out of the hospital 36 hours after I was born. Social services found someone to look after me. The foster carer was a lady called Jean.”
Jean labored to reconnect Jono with his biological parents, but her letters were returned unanswered, and on May 18th, 1990, Jean adopted Jono herself.
Despite having found a loving guardian, growing up was hard for Jono. In an interview with Adelaide Now, Jono says:
“I kind of felt like I was on my own, and I felt like I was the only one out in the world that was like me. People are lucky enough to win the lottery or they become professional footballers, doctors, lawyers, but, why did I have to end up looking like this?”
Feeling alone had a profound effect on Jono, who now travels all around the world, visiting children affected by various disabilities.
There’s no question that Jono has become a wellspring of inspiration to differently-abled people the world over.
But he’s also found inspiration in the love of his life, a beautiful woman named Laura.
They met while Jono was working in a gym, and he tells BBC (via NTD.tv),
“I just feel so relaxed in her company.”
And isn’t that really what it all comes down to? To have someone you can relax with, who knows you’re beauty inside and out like it’s their very own?
The couple has recently bought a house in Normanton, West Yorkshire, where Jono works with individuals with autism and continues being an inspiration to people everywhere.
BBC actually made a documentary starring Jocko, called Love Me, Love My Face. It covers his story and chronicles his attempt to reconnect with his biological parents.
Learn more about this amazing man and his beautiful journey in the video below!
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