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.”
This is what Jono Lancaster said while delivering a speech at NORD (National Organization for Rare Disorders) conference on October 21, 2015, in Washington D.C.
Jono suffers from Treacher Collins Syndrome. He is a public figure now, and has been living his life, defying all odds and breaking all the shackles! He, despite suffering from this major disorder, is not letting his enthusiasm to fade!
Jono, who is from West Yorkshire, UK, was born on October 31, 1985. He is the subject of the BBC documentary Love Me, Love My Face.
Read his full story below.
Jono has Treacher Collins Syndrome.
Jono has a genetic disorder which affected the way his facial bones developed, his eyes dropped downwards and he required a hearing aid. This type of condition is observed only in 1 out of 50,000 people in the US and about 1 in 10,000 in the UK. More physical features of the syndrome include a small lower jaw and partly drooping of lower eyelids.
In life, he has learnt to stay positive.
Jono is not sad about this. He says he’s lucky, as many people with Treacher Collins Syndrome need up to 70 separate surgeries to make their lives bearable. Inspirational, he is!
His parents left him alone!
His parents decided they couldn’t deal with his condition and they dumped him at a social service centre just 30 hours after his birth. He was later adopted by a woman named Jean Lancaster.
He’s not at all like the other boys.
It was at school that Jono learned he wasn’t the same as other boys, “They’d pull their eyes down, or run away, yelling that they’d catch my disease. I’d ask Jean why they did that, and she’d cry. Then I felt guilty that I’d made my mom cry.”
After growing up…