Man With Rare Disfiguring Treacher Collins Syndrome Flies Across World To Meet Boy With Same Condition

Jono Lancaster, 30, was born with Treacher Collins syndrome, a rare genetic disorder that affects about 1 in 50,000 people. Treacher Collins syndrome prevents the skull, cheekbones and jawbones from developing in a person. It also often results in a cleft palate, eye abnormalities that can lead to blindness, and in severe cases, the underdevelopment of the facial bones in a person with Treacher Collins syndrome can restrict the airway, causing life-threatening respiratory problems.

“People are lucky enough to win the lottery or they become professional footballers, doctors, lawyers but (I thought): ‘Why did I have to end up looking like this?'” Lancaster said.

He admits that it took him more than 20 years to learn to love his own face, but now he wouldn’t change it for the world.

In fact, he has dedicated his life to inspire others with Treacher Collins syndrome, and to teach them to love themselves for who they are. And so he flew to Australia earlier in November in order to meet 2-year-old Zackary Walton, of Mannum, who also happens to have the same syndrome.

“I grew up with Treacher Collins and 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,” Lancaster said — words that little Zackary will never have to repeat, now that he has met someone like himself.

Lancaster added, “I would have loved to have met somebody like myself when I was younger… somebody who had got a job, got a partner and said to me ‘these are the things you can do, you can achieve.'”

Zackary made headlines in Australia when his mother Sarah Walton lost her government funding that provided her family with a nurse to help care for Zackary one day a week. Zackary requires a tracheotomy tube to keep him alive. Walton did have services for her son reinstated by the Australian government, and next year, when he is three, Zackary will undergo a number of operations at the Women’s and Children’s Australian Craniofacial Unit — including one procedure to break his jaw in the hopes that he can breathe more easily.

It was Zackary’s mother Sarah who also contacted Jono on Facebook — Jono is the most famous person with Treacher Collins syndrome, and Sarah had hopes that her own son would meet him some day.

“He (Jono) is a celebrity to us — he’s a huge inspiration,” she said. “When he said he was coming to Australia, we knew we had to meet him and it’s made us so happy to see Zack meet someone like him.”

Jono and his partner, Laura Richards, spent several days with Zackary Walton and his family.

[Images via www.adelaidenow.com]