Treacher Collins Syndrome

Like many 26-year-olds, Jono Lancaster has a job he loves, a beautiful girlfriend and takes pride in his appearance.

But unlike most young men, Jono has Treacher Collins syndrome, a genetic disorder that affected the way his facial bones developed while he was in his mother’s womb.

The condition, which is thought to affect up to one in 10,000 babies in the UK, means he has no cheekbones – so his eyes droop downwards – and he has problems with his hearing, so has a bone-anchored hearing aid.

It has resulted in several operations, numerous hospital visits and his parents giving him up for adoption 36 hours after he was born.

But although Jono is now happy with how he looks, he says he struggled with depression during his teenage years.

“I was desperate to have friends, I’d do anything. I had no confidence. I’d buy lots of sweets and give them to the other kids so that they’d like me.

“I ended up doing stupid things so that people would talk about me for a different reason to the way I looked.

“I set a firework off in class, I got up to no good. It was quite often alcohol related, I got quite a bad reputation amongst other mums and teachers.”

But he says deep down he was getting lonelier and lonelier.

“I used to hide how unhappy I was from my mum. She had already done so much for me.

“But I didn’t like to go out unless I had to. I’d do things like cut my own hair so I didn’t have to look at myself in a mirror.”

He says a pivotal moment came when his friend became the manager of a bar and offered him a job.

“It was something I really wanted to do – at 19 or 20 working in a bar is the norm – I thought why shouldn’t I do it?

“I’d be dripping with sweat before every shift, I was so nervous and scared about people’s reactions. Drunk people can be so horrible, so obvious.

“It wasn’t easy, but at the same time I met so many nice people who were genuinely interested in me and my face.”

It gave him enough confidence to start dating – “rather than spend evenings at clubs hiding in the toilets” – and even get a job in a gym.

“I’d done a diploma in sports science at college and a fitness instructors course but it is such an image-based industry – gyms are full of mirrors – I used to e-mail people asking for jobs rather than drop my CV off.

“Then one day I went in to a Fitness First gym and met my boss Shaun. We had a chat, I gave him a workout and we really hit it off.”

Jono says being thrown in at the deep end boosted his confidence levels.

Which worked out better than he imagined, because it was at the gym that he met his long-term girlfriend, 20-year-old Laura Richardson.

“I was testing her resting heart rate and it was beating over a hundred beats a minute, so I thought she must have liked me!

“She says when she first met me, she noticed my face, but now she no longer sees it. It was the first time I was able to be completely myself with a girl.

“And look at us four years later, we have just bought a house together in Normanton in West Yorkshire. We are completely in love.”

But last year Jono faced his toughest test yet. He decided to try and track down his biological parents.

“It was something I’d always wanted to do. As a teenager I’d been angry and upset and wanted to meet them for the wrong reason – to ask them why they’d abandoned me – but as I matured I realised they obviously felt they couldn’t cope.

“I thought things might have changed. That they might want to know I was happy.”

Jono says he was “heartbroken” when he was rejected all over again.

“It was awful. Awful. I cried and cried. But I have come to terms with it. It must have been one of the hardest decisions they ever had to make.

“I found out they’ve gone on to have two more children. I’m glad they have got a family. I’m happy, I hope they are happy too.”

Jono, who now works as a team leader with adults with autism, says he is a firm believer that everything happens for a reason, but wants people to be more aware of what Treacher Collins is – and how to deal with it.

“What really frustrates me and upsets me is when a child in a supermarket stares and his or her mother tells them off.

“I wish they could come and talk to me so that I could tell them about it – so that is seems more normal.”

He says he also wants to help families in similar situations to him.

“If someone had said ‘this is me, my wife, my job’ to me when I was younger it would have helped massively.”

But Jono says he still has one big question he has to face.

Although Treacher Collins is a rare genetic condition that can affect anyone, the chances of him passing it on to his children are thought to be about 50%.

“I’ve met families with babies with various disabilities and seen how well they cope.

“I really want to do the school run, take my child to dance, gymnastics or football, but how can I knowingly put my child through operations, hospital appointments and bullying?

“I play around with it in my head – it drives me mad. We’re still young, there is plenty of time, but it is something Laura and I are going to have to think about somewhere down the line.”

But Jono says he would not change the fact he was born with Treacher Collins syndrome.

“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.”