Treacher Collins is genetic, which means that it is a trait that is passed down from parents to the children of 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. 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.”
Jono, now aged 33, says a pivotal moment came when he got a job working at a fitness gym. I studied a diploma in sports science at college and a fitness instructor’s course but it is such an image- based industry – gyms are full of mirrors – that I used to e-mail people asking for jobs rather than drop my CV off. Then one day I went in to a Fitness First gym and met my boss Shaun. We had a chat, I gave him a workout and we really hit it off. It was at the gym that Jono met his long-term girlfriend, Laura Richardson. “I was testing her resting heart rate and it was beating over a hundred beats a minute, so I thought she must have liked me!” he jokes. When she first met me, she noticed my face, but now she no longer sees it. It was the first time I was able to be completely myself with a girl.
Today the couple live together and are ‘completely in love’ Jono says he has made an effort to meet his birth parents, which was always something he wanted to do. He had many unanswered questions but when he asked for a meeting with them they rejected him once again. It was awful. I cried and cried. But I have come to terms with it. It must have been one of the hardest decisions they ever had to make. I found out they’ve gone on to have two more children. I’m glad they have got a family. I’m happy, I hope they are happy too. Jono now works as a team leader with adults with autism and helps raise awareness of what Treacher Collins is and how to deal with it.
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