When Jono Lancaster was born, his parents made a decision not to take him home from the hospital. The syndrom he was diagnosed with, Treacher Collins syndrome, a rare disorder that affects the facial structure and hearing abilities, was the reason they weren’t able to love him. Having the syndrome meant plenty of hospital visits and probably surgeries, and they weren’t willing to go through such an experience.
Sadly, Jono was just a few days old when he was forever abandoned by those who were supposed to love him unconditionally.
In the days that followed, social services did all in their power to find a suitable family for him. Luckily, an angel in the form of a loving and caring woman named Jean crossed paths with Jono. The moment she laid eyes on him, she knew he belonged with her. “How could you not love a child?” she said after hearing his story. “When can I take him home?” was the next question she asked.
Jono first shared his life story with the National Organization for Rare Disorders (NORD) Breakthrough Summit back in 2015 and gathered the attention of many.
“I was born with a genetic condition that affects my facial features. I have no cheekbones, and so my eyes dip down,” he said. “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.”
