The U.S. National Library of Medicine says Treacher Collins syndrome is a genetic disorder affecting 1 in every 50,000 people. It changes how bone and tissues of the face develop, generally affecting cheekbones, jaws, and chins in particular.
Treacher Collins syndrome results in facial abnormalities, but it does not affect 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.”
He currently has 12.4k Twitter followers, 61.2k Instagram followers, and a whopping 84.4k followers on Facebook— 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. At the 2015 Nord Conference, 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.
Not only has Jono managed to become a source of hope and inspiration for ‘differently abled’ children around the world, he has also—shockingly, to some— managed to find love in a beautiful blonde 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.”
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 around the world.
BBC actually made a documentary starring Jono, called Love Me, Love My Face. It covers his story and chronicles his attempt to reconnect with his biological parents.
Be sure to watch the full, 60-minute film below!
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