When Jono Lancaster came into the world, his arrival was met with an unexpected twist. His parents made the heart-wrenching decision to not bring him home from the hospital. The doctors had diagnosed him with Treacher Collins syndrome, a rare condition affecting facial structure and hearing abilities. Frightened by the prospect of numerous medical appointments and surgeries, they felt unable to embrace the challenges ahead and thus left him behind.
For Jono, this meant facing abandonment just days after birth, a time when he should have been wrapped in unconditional love. Fortunately, social services intervened promptly, searching tirelessly for a family that could offer him a loving home.
Amidst those uncertain times, a remarkable woman named Jean came into Jono’s life. From the moment she set her eyes on him, she knew he was meant to be part of her family. Responding to his story with compassion, she expressed her eagerness by saying, “How could you not love a child?” and immediately asked, “When can I take him home?”
Jono’s story first garnered widespread attention back in 2015 when he shared it at the National Organization for Rare Disorders (NORD) Breakthrough Summit. His narrative resonated with many as he spoke candidly about living with Treacher Collins syndrome.
He described, “I was born with a genetic condition that affects my facial features. I have no cheekbones, and so my eyes dip down. 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 met some kids who’ve had more than 70 surgeries to correct problems that would make their lives easier.”
Reflecting on Jean’s impact on his life, Jono gladly speaks of the day she legally became his mother, “Jean adopted me on May 18, 1990 – so I get two birthdays!” he joyfully recalls. “I used to tell other kids that my mom went to the hospital and she looked at all the babies and she chose me, whereas their parents had been stuck with them.”
Despite Jean’s attempts to connect with Jono’s biological parents over the years, each effort met with the same disheartening refusal—they wanted no part in his life, not even a chance to meet him.
Growing up, Jono faced bullying due to his unique appearance. As he entered his teenage years, these experiences left him questioning his self-worth. “When I became a teen, I began to think, why me? That snowballed into thinking about my birth parents. Parents are supposed to love you no matter what, even if you rob a bank. How would I ever have a family? Who will want me?” he pondered. The relentless pressure and self-doubt led him to despise his reflection, avoiding it at all costs.
However, a chance encounter at his bartending job sparked a change. Observing the disbelief and comments from patrons, one day, a robust man with an intimidating demeanor approached him, curious about Jono’s face. Zipping past fear, Jono explained, “I was born with Treacher Collins syndrome.” Surprisingly, the man responded lightly, leading to a brief humorous exchange about Jono’s hearing aids. For a brief moment, Jono experienced laughter with someone, rather than at his expense. It was a significant reminder to “focus on the good.”
Today, Jono enjoys a fulfilling life, not only accompanied by a supportive partner but also engaging in work as a motivational speaker. Committed to making a difference, he dedicates time to interact with children facing similar challenges, guiding them to embrace themselves wholeheartedly.
“So what’s changed?” he reflects. “People are still the same. My parents still want nothing to do with me. What’s changed is my attitude, and that’s so powerful. Instead of allowing negative energy to bring me down, I believe in myself. I wouldn’t change any of it. My attitude was more disabling than anything. With the right attitude, you can achieve anything.”
It is heartwarming to witness how Jono has grown to love himself for who he truly is, and his inspiring story demonstrates the strength of positive thinking.