He hated his face - now our Jono is a Jeans for Genes inspiration

Now 33, the Normanton man has dedicated his time to helping others with facial differences ever since.

Jono 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.

Full list of discounts and offers as Trinity Leeds Announce date for student night 2018

“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 Day, which will take place on Friday September 21, raises money for children and families affected by life-altering genetic disorders.

Money raised on Jeans for Genes Day - which is supported by a number of celebrities including former Leeds student and Girls Aloud singer Kimberley Walsh - 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.

Let us know if you’re raising money: email your Jeans for Genes photos to [email protected]

YEP says