"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 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.
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 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.
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."
Jono was bullied at school, and he hated his own appearance for a long time.
Jono was lashed out by his boss at a bar where, he thought, everyone was laughing at him. This incident changed his life.
Today, Jono works as an inspirational teacher talking about Treacher Collins. "My parents still want nothing to do with me," he says, "What's changed is my attitude, and that's so powerful. […] I wouldn't change any of it. My attitude was more disabling than anything. With the right attitude, you can achieve anything."
"My birth parents had no idea. When I was born, they were in total shock. I was out of the hospital 36 hours after I was born. Social services found someone to look after me. The foster carer was a lady called Jean. She was very short, and all her kids were grown, and she had so much love to give."
At present, he is travelling around the world and encouraging people of his kind, to deal with this with a positive attitude. Jono made his mark at the NORD (National Organization for Rare Disorders) conference on October 21, 2015, in Washington D.C. by sharing his story.
With the help of Jean, he is now living a happier life. He believes that one must not allow any negative energy to pull one down and stay away from negative thoughts and attitude.
But, as time heals all wounds, today we can see that smile on his face and that is what drives many of those whom he meets daily.
Hence proved! Jono is nearly 31 years old now and has learnt pretty well, how to deal with the rare congenital disorder.
For being the source of inspiration to many of us, who have been suffering and also complaining. He has always been an epitome of perseverance.
But, he did not let this rejection pull down his spirits. He believes in facing life and staying confident.
"Doctors always asked if I wanted corrective surgery... to get my cheek bones built up, my teeth straightened or my jaw broken and realigned, but despite how depressed I got I thought 'God made me like this'. I'm glad I didn't choose anything. I'm proud of who I am. And Treacher Collins made me who I am today."
Who said life is easy? Jono is the perfect example of leading a tough life with a never-say-die attitude. We are proud of you Jono! Stay as you are, a fighter!
Story updated by Vasundhara