Cytogenetics and the evolution of medical genetics

Author With Treacher Collins Syndrome Abandoned As A Baby, Now 'Full Of Self Love'

Jonathan "Jono" Lancaster was only 36 hours old when his parents abandoned him.

"My birth parents were horrified by my appearance," the West Yorkshire, England, resident tells the BBC. "My birth parents left 36 hours after I was born."

Lancaster was born with a rare genetic condition known as Treacher Collins syndrome, which affects the development of facial bones and tissues. The Mayo Clinic explains that most people with TCS have "underdeveloped facial bones, particularly the cheek bones, and a very small jaw and chin."

His condition is something Lancaster speaks openly – and often humorously — about.

"I call them my little Bart Simpson ears," he tells the BBC, explaining how the condition has manifested for him. "I don't have any cheekbones so my eyes appear the way that they are."

Lancaster found a loving home with a social worker named Jean, who fostered him and other children with disabilities. But Lancaster, who was adopted at age 5, says that his happy childhood memories are often marred by his struggle to accept his appearance.

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Jono Lancaster. Ken McKay/Shutterstock

"Looking back at high school, I have so many amazing memories, but behind those moments there was me trying my best to fit in," he said. "The older kids would pull their eyes down. They would sing or make chants up about myself."

"As I got older and people started getting into relationships that kind of didn't really happen for me, and that's when I developed so much hate for my face."

Lancaster said he was in a "really, really dark and angry place" when he thought about his birth parents, so he wrote them a letter.

"A couple of weeks later we got a letter back, and it simply said, 'We do not wish any contact. Further attempts will be ignored.' And both of them had signed it," he said. "Being rejected by those two people again, it hurt."

But it took another schoolyard incident to help Lancaster see his true calling.

Lancaster said he was giving a talk at a school about his condition when he was approached by some children. "A couple of kids came running over and they were like, 'Jono, Jono, Jono, can you show us your hearing aid?' 'Jono, Jono, I live with my grandparents.' 'Jono, I don't know my mom and dad.' 'Jono, I get bullied because of x,y, and z.'"

"Right there, in that playground, I was like, I need to do more of this."

Lancaster went on to found the Love Me Love My Face Foundation, which supports and raises awareness for those living with craniofacial conditions.

He also discusses how the media portrays those with facial differences on his Instagram, praising the depictions in Edward Scissorhands and decrying those in Netflix's The Mother.

"It's very common that a movie would use somebody with a visible difference and they will have them playing the bad guy," he said in an Instagram post. "Villains, monsters, evil creatures…It has such a negative impact on you."

And next month, Lancaster's first book, Not All Heroes Wear Capes, hits shelves.

"It's about the heroes that I've met in my life, and how ultimately, I became my own biggest hero," he told the BBC. "Truth is, my life has been full of a lot of love and a lot of adventure."

Not All Heroes Wear Capes. Ebury Press

And as he said in his Instagram post revealing the book cover, he hopes the book, which is about chance encounters with strangers and other people in his life, inspires people.

"Ultimately, you can become your own biggest hero," he said. "That's what this book is about. Becoming your own hero, full of self love."

'Destroyed' Dad Pleads With Parents To Educate Their Kids After Bullied Son With Rare Condition Is Called 'Monster'

An Idaho father is calling on parents to educate their children about the affects of bullying in response to the torment his 7-year-old son experiences because of a rare condition that disfigured his face. Being the target of teasing has led the second-grader to even talk about suicide.

Dan Bezzant says that while school administrators have been doing all they can to stop kids from bullying his son, Jackson, it hasn't been enough. In an accumulation of pain and frustration, Bezzant opened up about his feelings in a powerful and emotional Facebook post on September 14 when he heard older kids had called Jackson a "monster" during breakfast at school.

"I just broke down sitting in my car and crying my eyes out, not knowing what to do. I wrote the post as a plea for parents to educate their children and be aware of this issue," Bezzant, 42, of Idaho Falls, Idaho, tells PEOPLE. "It was a desperate moment, and I couldn't even go in the house. This has been going on a while, and it's been an accumulation of things that just destroyed me—it still chokes me up."

Jackson has Treacher Collins syndrome, which affects the development of bones and tissues in a person's face. People with the condition can have a notch in the lower eyelids, eyes that slant downward and vision or hearing loss due to other developmental abnormalities, according to the U.S. National Library of Medicine. The condition affects an estimated 1 in 50,000 people.

In the Facebook post, Bezzant describes how Jackson feels everyone hates him since he is called "ugly" and a "freak" nearly every day by children at school (he even has had rocks thrown at him). Bezzant says this caused Jackson, who turns 8 on September 28, to talk about suicide.

"Jackson has expressed those feelings before, and in the last few of months, he has said it a few times," he says. "That's what broke me down the most. He shouldn't have to feel that way—no one should have to feel that way just because they're different."

Courtesy Dan Bezzant

School officials have done a great job keeping an eye on Jackson to keep him safe, Bezzant says, but it's up to parents to do more. Teachers and aids can't be with Jackson every moment of the day, and much of the bullying has happened around corners and out of their view.

"I just want parents to take a lead role," he says. "They need to sit their children down and teach them we're all created equal, and everybody is different. We need to approach this with love and understanding."

Bezzant's post received a lot of attention over Facebook, and has more than 41,000 shares and 14,000 likes. He says people have messaged him offering to be Jackson's friend. One of the most high-profile people in the Treacher Collins community, Jono Lancaster, has even offered to come to Jackson's school to speak with students.

While his post has exposed thousands of people to Jackson's story, Bezzant doesn't want all of the attention to be focused on those who have Treacher Collins— bullying happens everywhere, to people with many conditions, and not just to children, he says.

Courtesy Dan Bezzant

"Bullying is a huge issue, and it needs to stop," he says. "No one should have to feel like they want to kill themselves because they're not like everybody else. It's horrific, and I don't want anyone to experience that."

But things are looking up for young Jackson: Bezzant says he has been participating in local events and was recently offered to be the guest of honor at several anti-bullying rallies.

On Sunday night, when FaceTiming with Bezzant, Jackson asked his father, "Dad, I'm famous, aren't I?"

It seems Jackson is realizing he isn't so alone, after all.

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