When Jono Lancaster was born, his parents made the heartbreaking decision not to take him home from the hospital. Diagnosed with Treacher Collins syndrome, a rare genetic disorder that affects facial structure and hearing, they felt unable to cope with the potential challenges, including numerous hospital visits and surgeries. Unable to see beyond his condition, they abandoned him, leaving their newborn son in the care of others.
In the days that followed, social services worked tirelessly to find a loving family for Jono. Fortunately, a compassionate woman named Jean came into his life. The moment she saw him, she knew he belonged with her. “How could you not love a child?” she said upon hearing his story. Her immediate question was, “When can I take him home?”
Jono shared his life story with the National Organization for Rare Disorders (NORD) at the Breakthrough Summit in 2015, capturing the attention and hearts of many.
“I was born with a genetic condition that affects my facial features. I have no cheekbones, and so 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’ve had more than 70 surgeries to correct problems that would make their lives easier.”
Reflecting on Jean, the woman who gave him a home, Jono said, “Jean adopted me on May 18, 1990 – so I get two birthdays! 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 efforts to connect with Jono’s birth parents, they remained uninterested and refused any contact with him.
Throughout his life, Jono, now 36, faced severe bullying because of his appearance.
“When I became a teen, I began to think, why me? That snowballed into thoughts 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 said. “I started to hate my face. I became aggravated at not being able to change the way I looked. I avoided looking at my reflection, even in windows walking down the street. I was ashamed of the way I looked.”
However, a pivotal moment at his bartending job helped him regain his self-confidence.
A customer, a tough-looking ‘skinhead’ with ‘muscles on top of muscles,’ approached him. No one wanted to serve the intimidating man, but Jono stepped up. The man asked bluntly, “What’s up with your face?”
Jono replied, “I was born with Treacher Collins syndrome.” The man responded with “all right.” Jono added, “I’m deaf,” and showed him his hearing aids. The man then asked, “Do they come with an off switch? Damn, you’re lucky. I have a wife and all she does is talk 24/7, and to be able to switch her yakking off…”
For the first time in a long while, someone laughed with Jono instead of at him. This moment reminded him to “focus on the good.”
Today, Jono has a partner and works as a motivational speaker. He dedicates his time to supporting young children with Treacher Collins syndrome, helping them accept themselves.
“So what’s changed?” he reflected. “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.”
Jono’s journey of self-acceptance and resilience serves as an inspiring reminder of the power of love and a positive attitude.
