Treacher Collins is genetic, which means that it is a trait that is passed down from parents to the children and adults affected by it. The disorder can impact eyes, ears, cheekbones, and chin, as well as being a potential cause for hearing loss and/or a cleft palate.
It affects only about one in every 50 000 newborns. Jono’s parents decided to give him up for adoption just 36 hours after he was born.
Orphaned, he underwent several operations and numerous hospital visits. Many believed no one would ever adopt Jono but a woman by the name of Jean stepped into his life, claiming the role of his mom. Growing up with this disorder was a learning process. Jono had plenty of opportunities growing up to undergo corrective surgeries that would have made his appearance more conventional, but Jono opted instead to learn to love his face the way it is.
Despite his challenges, Jono has gone on to do amazing work as an advocate for people who are deformed with rare diseases, and outside of that lives a very normal happy life, proving that appearances aren’t as important as a good heart and strong will.
will.
“I was desperate to have friends, I’d do anything. I had no confidence. I’d buy lots of sweets and give them to the other kids so that they’d like me. I ended up doing stupid things so that people would talk about me for a different reason to the way I looked. I set a firework off in class, I got up to no good. It was quite often alcohol related, I got quite a bad reputation amongst other moms and teachers. But deep down I was getting lonelier and lonelier,” he says. “I used to hide how unhappy I was from my mom. She had already done so much for me. I didn’t like to go out unless I had to. I’d do things like cut my own hair so I didn’t have to look at myself in a mirror.”
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