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Genetic Linkage

Jono Lancaster Fights Treacher Collins Disease With Attitude

Jono Lancaster spoke at the National Organization for Rare Disorders (NORD) Breakthrough Summit, October 21.
When Jono Lancaster was born 30 years ago, his parents took one look at his face, and abandoned him. Today Jono, who has Treacher Collins syndrome, travels the world meeting kids with the condition and encouraging them to harness the greatest tool against the genetic disease – a positive attitude. Jono kicked off the National Organization for Rare Disorders (NORD) Breakthrough Summit October 21 by sharing his story.

People with Treacher Collins syndrome do not have certain facial bones, and about half have hearing loss. Only 1 in 50,000 people in the US has it, and about 1 in 10,000 in the UK, Jono's home. Most cases are autosomal dominant and due to mutations in the TCOF1 gene.

But this post isn’t about DNA. It's about an incredible young man who is smart, funny, and caring, and quite beautiful. Here in Jono’s own words, from the NORD conference:

“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. 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.

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. Social Services told Jean there was a child in hospital whose parents were horrified, and there was no maternal bond. Jean said, “How could you not love a child?” She took one look at me and said, “Hell yeah, let’s make this happen!”

Social Services warned Jean about my appearance, that people were talking about my face. As soon as she saw me, she smiled. She picked me up and felt an instant bond. She turned to the nurse and said, “When can I take him home?”

For 5 years Jean tried to reconnect with my birth parents, and Social Services sent them reports on my progress and photos. I was a cute little kid. My parents returned the letters unopened. Jean adopted me on May 18, 1990 – 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.

(In 2010 Jono told BBC News that he’d re-contacted his parents, now that he was old enough to understand that maybe they’d felt they couldn’t do a good job raising him, but they rejected him all over again. He learned that they’d had two healthy children after him.)

Jean took me to all my hospital appointments. I felt special! After the appointments we’d have a fun day, usually going to a museum. As I grew up, around age 7, I noticed I was different from other kids. 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.

The nail in the coffin was going to a science museum after I’d had surgery. There was a couple on the bus. The couple was all loved up, holding hands, kissing. They made me smile. Then, they started making fun of me. I was used to kids making fun of me on the playground, so I hid my feelings. Then I looked around for my mom. She was talking to them, and tears were rolling down her cheeks.

I isolated myself. When I became a teen, I began to think, why me? That snowballed into thinking about my birthparents. 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?

I 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. My friends all had dreams and ambitions, and then they started getting girlfriends. I wanted to feel cool, popular, attractive. Girls would flirt with me on a dare, as a joke. I’d look over their heads and see people laughing.

At 16, 17, 18 … why me? My friends had jobs, went on vacations, were having the times of their lives. They invited me but I chose to hide away. I so wished I was them, palling around with chicks, getting drunk, creating memories.

My friend Ben used to bully me. He’d click his fingers and girls would come running. Ben worked in a bar. One day he said, “Dude, you have to come with me. It’s a good life. You get drunk while working and then go out.”

So I got my uniform and started working. On that night I could have passed out, it was so scary. But I was proud of myself. All I could see was people making fun of me. I lasted 3 hours. People couldn’t order drinks, they were laughing so hard. I wanted to disappear.
I went home and Mom was on the doorstep, eager for my return. All I could tell her was the number of hours I’d worked and that the money wasn’t right. I went up to my room and started to think, would anyone miss me if I weren’t here?

But Ben said to quit feeling sorry for myself, and to get my ass back to the bar. So I did. People made fun of me. Every laugh, every whisper, every muttering of words under the breath, I assumed it was about me.

The moment that changed all that is laughable. A skinhead had come in, a guy on steroids with muscles on top of muscles. He was scary. He was holding money at the bar and staring at me. I was serving from left to right, praying someone else would serve him.

“What do you want to drink?” I asked him.

“Before you get my drink, I have a question. What’s up with your face?”

People snickered. The boss was watching.

“I was born with Treacher Collins syndrome.”

“All right.”

I was embarrassed.

“I’m deaf,” I added, showing him my hearing aids.

“Do they come with an off switch? Damn, you’re lucky. I have a wife and all she does is talk 24/7, and to be able to switch her yakking off...”

And he was laughing WITH me. Not AT me. Then he bought me a drink. I’ll never forget it. It's amazing how someone can say a simple thing and it can change your world forever. After that, I started to focus on the good.

There was a great girl who wore skinny jeans and loved Foo Fighters, all the boys fancied her. I stayed away. One night, she said, “Hey Jono! Fancy going out for a drink?”

I’m thinking, this can’t be real.

“I love your face and think you’re a cool guy.”

I went from feeling ugly to feeling like I was Johnny Depp. My ego shot through the roof and I felt like a regular guy.

She wanted to go around Europe and dance. So I thought if it was meant to be, she’ll come back. So she went around Europe, and I started dating.

I began working in a gym at age 23 as a personal trainer, with guys with great bodies and girls with fake boobs. I met my partner Laura in the gym. Instead of avoiding mirrors, I put a smile on my face and began to thank that life is good.

The past 5 years have been crazy, with media coverage, and I’ve even done some modeling. It took me 23 years to accept my face and who I am.

So what’s changed? People are still the same. My parents still want nothing to do with me. What’s changed is my attitude, and that’s so powerful. Instead of allowing negative energy to bring me down, I believe in myself. I wouldn’t change any of it. My attitude was more disabling than anything. With the right attitude, you can achieve anything.
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