When Jono Lancaster was born with Treacher Collins syndrome, a rare genetic disorder that affects facial structure and hearing, his parents felt overwhelmed by the challenges they might face and made the difficult decision not to bring him home from the hospital. Unable to see beyond his condition and the prospect of countless medical procedures, they left their newborn son in the care of others.
In the days that followed, social services worked tirelessly to find a home for Jono. That’s when Jean, a compassionate woman, entered his life. From the moment she saw him, she felt an instant connection. “How could you not love a child?” she remarked. Her first question was, “When can I take him home?”
Jono shared his life story at the Breakthrough Summit for the National Organization for Rare Disorders (NORD) in 2015, touching many hearts.
“I was born with a genetic condition that affects my facial features. I have no cheekbones, which makes my eyes dip down,” Jono explained. “I love my little ears—they don’t get cold at night. But I do need hearing aids. I’m one of the lucky ones. More severely affected individuals need help with feeding and breathing. I’ve met kids who have had over 70 surgeries to improve their quality of life.”
Reflecting on Jean, who became his adoptive mother, Jono shared, “Jean adopted me on May 18, 1990, so I celebrate two birthdays! I used to tell other kids that my mom went to the hospital, looked at all the babies, and chose me, while their parents were just stuck with them.”
Despite Jean’s efforts to reach out, Jono’s birth parents remained uninterested and refused any contact with him.
Growing up, Jono, now 36, faced relentless bullying because of his appearance.
“As a teenager, I started questioning, ‘Why me?’ Those thoughts spiraled into wondering about my birth parents. Parents are supposed to love you unconditionally, no matter what. How could I ever have a family of my own? Who would want me?” he recalled. “I began to hate my face and grew frustrated that I couldn’t change how I looked. I avoided my reflection, even in windows as I walked down the street. I was ashamed of my appearance.”
However, a turning point came while working as a bartender.
One day, an intimidating customer—a muscular, tough-looking man—approached him. No one else wanted to serve the man, but Jono stepped up. The man asked bluntly, “What’s up with your face?”
Jono calmly replied, “I was born with Treacher Collins syndrome.” The man nodded and said, “Alright.” Jono added, “I’m deaf,” and showed his hearing aids. The man then joked, “Do they have an off switch? You’re lucky. I have a wife who talks nonstop. It would be great to turn her off sometimes.”
For the first time in a long while, someone laughed with Jono, not at him. This moment reminded him to “focus on the good.”
Today, Jono is a motivational speaker with a partner, dedicating his time to supporting children with Treacher Collins syndrome and encouraging them to embrace their uniqueness.
“So, what’s changed?” he reflected. “People are still the same. My birth parents still want nothing to do with me. What’s changed is my attitude, and that’s incredibly powerful. Instead of letting negativity pull me down, I choose to believe in myself. I wouldn’t change any of it. My attitude was more disabling than anything else. With the right mindset, you can achieve anything.”
Jono’s journey of self-acceptance and resilience is a powerful reminder of the strength of love and a positive attitude.
