Jono Lancaster is no stranger to campaigning. He tells Catherine Scott why he became an ambassador for the Jeans for Genes charity.
Jono Lancaster was born with Treacher Collins Syndrome.
This rare genetic condition, which is believed to affect around one in 10,000 babies, meant that he was born with no cheekbones and hearing difficulties.
It took the Normanton man, now 33, more than 20 years to accept the way he looked and start to love himself. Since then he has dedicated his time to help other with facial differences.
“I grew up hating the way I looked, but then I went on a journey of self-exploration, through which I learned to love myself and support myself,” explains Jono, who now travels the world giving talks and speaking in schools.
“My birth parents had no idea I was going to have Treacher Collins. When I was born, they found it too much for them, and I was given up for adoption.
“When I was a child, I felt ugly. I used to push my eyes up to make them ‘normal’. I got so angry and upset that I couldn’t make my face right up until I was about 20. It all changed from there.”
He started to do some television work and has now set up his own foundation. Love Me Love My Face, with support from Jeans for Genes
“I am just sad that it took me 22 years to accept how I look, I wish I had been able to get the support from Jeans for Genes back then and had a mentor like me to help support me. But then I suppose I wouldn’t be the person I am today and I like the person I am today. My back story is what defines me.”
Jono’s life began to change when he got a job working at the Reflex bar in Wakefield. His confidence grew and he then pursued his dream of working as a personal trainer in a gym.
“I am naturally a very shy introverted person, but I soon realised once I started talking about my experiences it really resonated with people. They said what a difference talking to me had made to them.” He has recently returned from Norway and America, giving talks and working with families with cranial facial conditions and he admits that it sometimes becomes too much for him.
“I have always been conscious of keeping my body fit but I think my mind suffered a bit. I couldn’t stop thinking about these children and how they were bullied and that reminded me about my childhood, I found myself out shopping and then bursting into tears.”
He finds that yoga and meditation help him,
“I like the fact that I care about all these people but I needed to come to terms with it rather than take it all on board and I have done that now.”
Jono has been working with Jeans for Genes for the last seven years.
“They are such a great charity doing such great work,” he says,
“Jeans for Genes is just one day but the work they do with people with genetic disorders goes on for a lifetime.”
Jeans for Genes, as a charity, helps children with similar conditions to Jono. It is estimated that one in 25 children is affected by a genetic disorder, which means 30,000 babies and children are diagnosed in the UK every year. Whereas some disorders are apparent at birth, others are diagnosed at different stages throughout childhood.
Teddy Ellerby from York was diagnosed with the rare genetic disorder Norrie Disease when he was just a few months old. An eye problem was picked up with the new-born tests – his eyes weren’t reflecting the light correctly. After further examination by a paediatric ophthalmologist, worried first-time parents Rachael and Lee were told one retina had fully detached and the other was partially detached.
Norrie Disease is a rare genetic condition which causes boys to be born without any vision. It is an X-linked disorder – women who are carriers have a 50/50 chance of having sons who are affected and the same odds of having a daughter who is a carrier. In addition to lack of vision, boys may have hearing loss, autism, cognitive impairment and mobility problems. Around 30 families are known to have Norrie Disease in the UK.
Rachel said: “It was such a shock for us but at the same time it was the only world he’d ever know. As he’s our first child it’s all we would know too. I don’t know if it is because I work with adults with learning disabilities, but I was always focussing on the positives. As long as Teddy is healthy and happy, that’s all I wanted. At the beginning it seemed like the diagnosis was the end of the world, but Teddy amazes me every day. The fact that he can’t see hasn’t hindered him. We always stay positive.”
Jeans for Genes Day, which will take place on Friday, raises money for children and families affected by life-altering genetic disorders. Money raised on Jeans for Genes Day funds the work of Genetic Disorders UK and provides grants to organisations for projects, day-to-day support, equipment, respite and events which bring together affected children and their families. For more information visit www.jeansforgenesday.org.