At only 36 hours old, Jono Lancaster was abandoned by his parents when they learned he had a rare genetic disorder called Treacher Collins syndrome.
Treacher Collins is a condition that affects an estimated 1 in 50,000 children. The syndrome is caused by genetic mutation and affects the development of bones and other tissues of the face. “Typical features include downward-slanting eyes, micrognathia (a small lower jaw), conductive hearing loss, underdeveloped zygoma, drooping part of the lateral lower eyelids, and malformed or absent ears.”
“I ended up doing stupid things so that people would talk about me for a different reason to the way I looked,” he told BBC News.
“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 mums and teachers.”
When a friend offered him a job, Jono says his life took a turn for the better. He gained confidence and started speaking more openly to people about his condition.
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Now, 31 years old, Jono is an inspiration to children with Treacher Collins syndrome and their families. He works as a team leader with adults with autism, says he is a firm believer that everything happens for a reason, but wants people to be more aware of what Treacher Collins is – and how to deal with it.
Written By Raven Fon