When Jono Lancaster was born, his parents decided not to take him home from the hospital. They were worried about his diagnosis of Treacher Collins syndrome, a rare condition that affects how a person’s face looks and how well they can hear. Because of this, they felt they couldn’t love him. They didn’t want to deal with all the hospital visits and surgeries that would come with his condition.
Sadly, just a few days after he was born, Jono was left behind by the very people who should have loved him the most.
In the following days, social services worked hard to find a family that could care for him. Fortunately, a kind woman named Jean came into Jono’s life. The moment she saw him, she felt a strong connection and knew he was meant to be with her. “How could anyone not love a child?” she said after learning about his situation. “When can I bring him home?” was her next question.
Jono first told his life story at the National Organization for Rare Disorders (NORD) Breakthrough Summit in 2015, and it really caught a lot of people’s attention.
“I was born with a genetic condition that changes how my face looks. I don’t have cheekbones, so my eyes kind of droop,” he explained. “I really like my small ears because they stay warm at night. But I do need hearing aids. I consider myself lucky. Some kids have it much worse and need help with eating and breathing. I met some kids who have had over 70 surgeries just to make their lives a bit easier.”
When talking about Jene, the woman who gave him a caring home, Jono shared:
“Jean adopted me on May 18, 1990 – so I get to celebrate two birthdays!” he said. “I used to tell other kids that my mom went to the hospital, looked at all the babies, and picked me, while their parents just had to take whoever they got.”
Arrived in beautiful Adelaide to meet this little superstar. #adelaide #australia #treachercollins #lovinglife pic.twitter.com/XKTNbe5nnl
— Jono Lancaster (@Jono_Lancaster) November 17, 2014
Jean made several attempts to reach out to Jono’s birth parents, but each time, they responded that they wanted nothing to do with him, not even a meeting.
Jono, now 36, faced bullying throughout his life because of his appearance.
“When I hit my teenage years, I started to wonder, why is this happening to me? That led me to think about my birth parents. Parents are supposed to love you no matter what, even if you do something really bad. How could I ever have a family? Who would want me?” he shared. “I began to dislike my face. It frustrated me that I couldn’t change how I looked. I tried to avoid mirrors and even the reflections in shop windows. I felt embarrassed about my appearance.”
But then something changed that helped him feel better about himself.
While working as a bartender, Jono often caught people staring and commenting on his looks. One day, a tough-looking customer with a lot of muscles walked in, and no one wanted to serve him. Jono decided to take the chance. “Before you order, I have to ask, what’s up with your face?” the man inquired.
“I was born with Treacher Collins syndrome,” Jono replied. The man simply said, “Okay.” Then Jono added, “I’m deaf,” showing him his hearing aids. The man responded, “Do they have an off switch?” He continued, “Man, you’re lucky. I have a wife who talks all the time, and being able to turn that off would be amazing…”
This guy dunt know how to take a bad photo! He's such a cool dude. @JeansforGenes around the world. pic.twitter.com/TLXiaUPOGK
— Jono Lancaster (@Jono_Lancaster) November 14, 2014
For the first time in a long time, Jono felt someone laughing with him instead of at him. It reminded him that he should “focus on the good.”
Now, he has a partner and works as a motivational speaker. Jono makes it a point to spend time with young kids who have the same syndrome he does, helping them embrace who they are.
“So what’s different now?” he asked. “People haven’t changed. My parents still don’t want to be part of my life. What’s different is how I see things, and that’s really powerful. Instead of letting negativity drag me down, I choose to believe in myself. I wouldn’t change a thing. My mindset was more limiting than anything else. With the right mindset, you can accomplish anything.”
We are so happy that this man has learned to love himself just the way he is.
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