Treacher Collins Syndrome is a rare genetic disorder that can cause problems with seeing, hearing and even breathing. But it does not affect an individual’s intelligence or, more importantly, the capacity to feel the pain of rejection.
The disorder affects the development of bones and tissues of the face, including the eyes, ears, cheekbones and jawbone. About 1 in 50,000 people are born with Treacher Collins, whose facial characteristics typically include eyes that slant downward, sparse eyelashes and misshapen ears.
Jono Lancaster was born in October 1985. When doctors diagnosed him with TCS, they told his parents he would probably never walk or talk. They put him up for adoption when he was less than two days old.
But two weeks later, in stepped foster mother Jean. She just saw “a little baby that needed looking after” and simply “fell in love with him.”
Five years later, she officially adopted him.
And he’s never forgotten her love.
This lady may be a little short in height, but this lady has the biggest heart out of every one I’ve ever met. This lady has been a foster carer for 30 years, she loves and has given herself to so many.
This lady cried every time a child moved onto another foster home as she felt somehow she had failed them. This lady despite been a single mom in her 40’s took me on despite not knowing what the future held.
This lady adopted me and along with Claire and Stephen gave me an amazing family. This lady is an angel, sent to me when I needed one the most.
This angels name is Jean, my mum, my hero.
Even with that unconditional love, though, it wasn’t until Jono was in his early 20s that he finally accepted the way he looked and stopped shying away from mirrors.
“I’ve had to be positive throughout my whole entire life. Everybody just looks at me and underestimates me, and I’ve always had to prove people wrong.”
He’s come a long way since then.
I am proud of who I am and what I have achieved – and Treacher Collins made me who I am today.”
Now 32 and with a long-time girlfriend who he met at the gym, Jono is a vocal advocate for others affected by Treacher Collins, using his own experiences to speak with groups and at schools around the world.
But given the opportunity to undergo facial reconstructive surgery, would he take it?
Absolutely not, because he wouldn’t be him.
“God made me like this and I was born like this for a reason.”
So what’s changed? Where does his new outlook come from?
I’m still a lad from West Yorkshire with the same amazing family and friends, (they’ve always been there). I still have the same face, I still have Treacher Collins!
Instead of feeling sorry for my self I believe in myself. Instead of asking why me, I’m thinking it’s good to be me. Instead of hating the way I look I love the way I look.
Instead of hiding away I’m choosing to show my face to the world and the amazing smile and blue eyes that go with it. I’m choosing to live!
There’s nothing more disabling than a bad attitude!!!!! Believe in yourself, be positive and love all that you are and your world will become a better place too!
To find out more about this incredible man whose positive outlook enables him to advocate for others, watch the BBC documentary “Love Me, Love My Face” below. Share to inspire a positive attitude and love of self in others!
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