How Jono Lancaster Embraced Treacher Collins Syndrome and Is Inspiring Others
Every child deserves to be loved. Deep down, every one of them wants to surround themselves with family and friends. We don’t want to feel rejected or alone in the world.
That very belief is exactly what shocks us when we hear about people like Jono Lancaster. How can two people prepare for and carry a child for nine months and abandon a newborn because of how it looks?
Lancaster is a 33-year-old man from England who has become an incredible success story and even started a charity. However, the genetic disorder he was born with resulted in years of anguish.
What Is Treacher Collins Syndrome (TCS)?
Treacher Collins Syndrome is genetic disorder that “affects the way the bones of the face develop before a baby is born.” (1)
Affecting approximately 1 in 50,000 people, TCS is rare and most often caused by mutations in the TCOF1, POLR1C, or POLR1D gene.
“In individuals without an identified mutation in one of these genes, the genetic cause of the condition is unknown,” according to the U.S. Genetics Home Reference. (2)
For Lancaster, TCS kept him from developing cheekbones, so his eyes dip downward. It has also caused hearing problems for which he uses a specialized hearing aid. In addition to those symptoms of Treacher Collins Syndrome, others may include: (1)
- Drooping upper eyelids
- Notches in the lower eyelids
- Small cheekbones
- Fewer teeth than usual (that may be crooked and discolored)
- Small lower jaw causing an overbite
- Open or split roof of the mouth (cleft palate) and upper lip (cleft lip)
- Small, unusually shaped ears
- Small or missing ear openings
These physical differences are what caused Lancaster’s birth parents to abandon him 36 hours after he was born. Thankfully, an amazing woman with a huge heart named Jean Lancaster adopted Jono shortly after.
The Long, Hard Journey to Self-Love
Had the absolute honour of spending a few days in Oslo, Norway this weekend. . Meeting and getting to know these incredibly talented ladies! The whole weekend was run by Norway’s Craniofacial Community and had over 20 families attend. Was amazing to be a part of it and was great to see so many full of love confidence, ambition and drive. #loveyourself #treachercollins #raisingawareness #antibullying #tcs #baha #hearingaids #oslo #norway #apert #crouzon #pfeifer #craniofacial
A post shared by Jono Lancaster (@jonolanc) on
While Jean loved Jono, she also wanted him to reconnect with his parents. But, after numerous unanswered letters, she decided to adopt the young boy with Treacher Collins Syndrome on May 18, 1990.
Despite all the love he received growing up, Lancaster was bullied and socially alienated by kids at his school. In a 2004 interview with Adelaide Now, Lancaster expressed this isolation:
“I kind of felt like I was on my own, and I felt like I was the only one out in the world that was like me. People are lucky enough to win the lottery or they become professional footballers, doctors, lawyers, but, why did I have to end up looking like this?” (3)
Fortunately, Lancaster’s mindset started shifting at the age of 19 when he got a job at a bar. Social anxiety and job in the hospitality industry do not seem like a recipe for success. But this job quickly brought him out of his shell, which helped enormously when he completed a fitness degree and began working at gym.
That’s where he met Laura Richardson, now his wife. And the two have made it their lifelong mission to help others with Treacher Collins Syndrome and other special needs such as autism. (4)
Love Me, Love My Face
The Love Me, Love My Face foundation is something Lancaster and his wife began in order to inspire, support, and educate others about TCS and other craniofacial conditions.
Learning about how incredible Lancaster is and all the loving things he’s doing for others makes you wonder… Would his birth parents be proud of him? Would they want to be part of his life now?
Only time will tell. That said, we hope that his story has shed light not only on Treacher Collins Syndrome, but how each and every one of you can positively shape the lives of other people – people who are bullied; people who are isolated; people whose only desire is to experience love.
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