A couple of days ago, we shared our conversation with Lina Abdulkarim about Jeans for Genes day. Today, on Jeans for Genes day, we are bringing you our conversation with Jeans for Genes Day ambassador, Jono Lancaster. An inspiration (just in general!) for raising awareness and supporting those who are affected by Treacher Collins Syndrome.
Sincere and open about his journey from childhood to the present day, Jono told us how his life changed for the better when he realised that this genetic disorder, causing disfigurement to his face, wasn’t going to prevent him from living his life, his previous negative attitude on the other hand, was.
“My attitude has changed, my face hasn’t.”
A star in the media for his warmth and commitment to helping people, Jono explained how his work began with a powerful documentary:
“Quite a while ago I was doing some work in the media around the options for people who have genetic conditions, with starting a family – there is currently lots going on and lots of options. I went into schools talking to the kids about genetics and my growing up with a genetic condition – It can be made awful purely by the words kids say. I believed that if I had a charity like Jeans for Genes when I was younger, it would have helped so much.”
Jono’s advice to young people is universal and brilliantly positive:
“My message is to all kids. I share my journey with them. My life goals are the same as most of theirs, we like the same things, and every single one of them shares something with me. I didn’t ever think I would find work or love when I was younger, all the other kids around me at school were perfect in my eyes, I felt very negatively about myself. I got it so wrong. My face was not going to hold me back. If I heard someone laughing or talking quietly, I thought it was about me. Now I love my face and my life. We can go on to do amazing things when we change how we think about ourselves.”
Jono regularly goes into schools, colleges and universities to speak to people about his genetic condition, breaking the stigma or playground ostracising that can affect people with Treature Collins Syndrome, often these experiences cause more upset than the physical symptoms.
“Growing up with my face, I craved the opportunity to meet someone with the same condition as me. I go to meet individuals and their families who have their own stories to tell. I do everything I can to meet people with my condition because I needed someone like me growing up, so off I go to meet them.”
Jeans for Genes Day donations have provided the first grant to Jono’s newly launched Charity ‘Love Me, Love My Face”, a foundation that supports families with medical costs, services and very practical solutions to the issues caused by Treacher Collins Syndrome. These solutions can be as simple as hearing aids to children in developing countries or sign language lessons to members of the wider family, so the child can communicate with more people.
Every previous experience Jono’s had along the way to creating his own foundation, was followed by a strong feeling to do more.
“I was sat with my friends and just thought… lets start a charity! Literally,12 years ago I was hiding away and hating the world and now have this amazing life.”
When asked about his biggest inspiration, Jono cited his adoptive mother as an angel and reason why he got inked with a tattoo on his right arm:
“It says ‘and then along came an angel’ – this is my mum but it could be for complete strangers. I couldn’t find happiness for years, but some people just literally being themselves had an impact that changed me forever – those people are special and we all have the chance to make an impact every single day. The smallest thing can change someone’s day”.
Talking fondly about his adoptive mother, he explains how she chose him:
“She’s incredible. A single lady in her 40’s who decided to foster kids with disabilities. The nurses had lots of conversations with her, warning her about my face. She didn’t care. When she picked me up, she felt an instant bond. My mum chose me.”
Despite being offered the option of surgery, Jono was adamant he did not want to change; initially this was a negative thing:
“I hated my face and I didn’t want my face to be improved. As I got older, the more I looked in the mirror, I started to smile at myself, and I used to think – hey I’m a good looking lad – I wouldn’t swap it for David Beckham now!”
To celebrate Jeans for Genes Day, Jono and his friends will be taking to social media (in their denim) to promote the Genetic Disorders charity. The message will be loud and clear about how 1 in 25 people have a genetic disorder, which is one kid in each class.
Talking to Jono was a very uplifting experience for Noctis. He signed off by explaining that he believes in everything happening for a reason; “Every year I get birthday cards from all over the world. I connect so hard with these people. There are a lot of happy tears”.
Photography by Julian Brown