When Jono Lancaster was born, his parents made the heartbreaking decision not to take him home. He was diagnosed with Treacher Collins syndrome, a rare genetic disorder affecting facial structure and hearing. Overwhelmed by the challenges, including frequent surgeries and hospital visits, they felt they couldn’t cope and left him in the care of others.
Social services quickly stepped in to find Jono a loving home. Jean, a compassionate woman, immediately felt a connection when she learned about his story. “How could you not love a child?” she asked. Her first question was, “When can I take him home?” And just like that, Jono found a new family.
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At the National Organization for Rare Disorders (NORD) Breakthrough Summit in 2015, Jono shared his remarkable story.
“I was born with a genetic condition that affects my facial features. I have no cheekbones, so my eyes dip down. I love my little ears, they don’t get cold at night. But I do need hearing aids,” Jono explained. “I’m one of the lucky ones. Others with Treacher Collins face greater challenges, needing surgeries just to eat or breathe.”
Reflecting on Jean, the woman who adopted him, Jono said, “She officially adopted me on May 18, 1990—so I get two birthdays! I used to tell kids that my mom went to the hospital, looked at all the babies, and chose me, while their parents were stuck with them.”
Despite Jean’s efforts to reconnect with Jono’s birth parents, they remained uninterested and refused contact.
Growing up, Jono, now 36, faced bullying because of his appearance. As a teenager, he struggled with self-acceptance and the pain of his birth parents’ rejection.
“I started to hate my face,” Jono recalled. “I avoided mirrors and reflections. I was ashamed of how I looked.”
Arrived in beautiful Adelaide to meet this little superstar. #adelaide #australia #treachercollins #lovinglife pic.twitter.com/XKTNbe5nnl
— Jono Lancaster (@Jono_Lancaster) November 17, 2014
A turning point came during his bartending job when an intimidating customer bluntly asked, “What’s up with your face?” Jono confidently replied, “I was born with Treacher Collins syndrome.” The man’s humorous response about wanting a hearing aid to “turn off” his wife’s talking unexpectedly broke the tension, and for the first time, Jono felt seen in a positive way.
That moment reminded him to focus on the good in life. Today, Jono is a motivational speaker, supporting children with Treacher Collins syndrome in embracing who they are.
“So, what’s changed?” he reflected. “My parents still don’t want anything to do with me. But what’s changed is my attitude. Instead of letting negativity weigh me down, I believe in myself. My attitude was my biggest obstacle. With the right mindset, you can achieve anything.”
Jono’s journey is a powerful reminder that love and self-acceptance can overcome even the toughest challenges.
