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.<\/p>\n
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. \u201cHow could you not love a child?\u201d she said upon hearing his story. Her immediate question was, \u201cWhen can I take him home?\u201d<\/p>\n
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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.<\/p>\n
\u201cI was born with a genetic condition that affects my facial features. I have no cheekbones, and so my eyes dip down,\u201d Jono explained. \u201cI love my little ears, they don\u2019t get cold at night. But I do need hearing aids. I\u2019m one of the lucky ones. More severely affected individuals need help with feeding and breathing. I\u2019ve met kids who\u2019ve had more than 70 surgeries to correct problems that would make their lives easier.\u201d<\/p>\n
Reflecting on Jean, the woman who gave him a home, Jono said, \u201cJean adopted me on May 18, 1990 \u2013 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.\u201d<\/p>\n
Despite Jean\u2019s efforts to connect with Jono\u2019s birth parents, they remained uninterested and refused any contact with him.<\/p>\n
Throughout his life, Jono, now 36, faced severe bullying because of his appearance.<\/p>\n
\u201cWhen 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?\u201d he said. \u201cI 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.\u201d<\/p>\n
However, a pivotal moment at his bartending job helped him regain his self-confidence.<\/p>\n