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“I used to hate my face but now I’m proud of it”

“My birth parents were horrified by my appearance and abandoned me 36 hours after I was born. That was difficult.”

Jono Lancaster He was born in West Yorkshire, in the north of England37 years ago, with a condition called Treacher-Collins syndrome.

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This syndrome is present since the baby is in the womb and is given by a mutation of the genes responsible for the formation of proteinswhich play a fundamental role during pregnancy in how bones and tissues develop.

As a result, the face may present with abnormalities such as flat or sunken cheekbones, very small jaws, small or non-existent ears, a downward slant of the opening between the upper and lower eyelids, and hair on the scalp that extends to the cheeks, depending on to the US National Library of Medicine.

“I don’t have cheekbones, so my eyes look this way,” says Lancaster in front of the BBC cameras. And as she touches her ears, she says, “I call them ‘my little Bart Simpson ears.'”

At two weeks old, a woman named Jean met him at the hospital and took him in. When he was 5 years old, Jean managed to adopt him.

“Throughout that whole process, she took in other kids, all with different disabilities,” Jono recalls.

teasing and bullying

Lancaster started school like any other child, but as a teenager he had to endure teasing and bullying from other students.

“Older children pressed their eyes down, they sang about me” he says. “I wanted to hurt them as much as I was hurt. I was in a very, very dark and angry place when I thought about my birth parents.”

“Looking back, I have so many amazing memories from high school, but behind those moments I was trying my best to fit in,” she admits.

His negative self-perception increased over the years.

“As I got older, the others started dating, but that didn’t happen to me. That’s when I developed so much hate for my face“, he assures.

One day he wanted to get in touch with his biological parents, to tell them that he was fine and that he was happy, so together with his mother Jean they wrote a letter. A couple of weeks later she received a reply signed by both of them: “We do not want any contact. Further attempts will be ignored”.

“Getting rejected by those two people again, it hurt.”

example of overcoming

A few years ago he was asked to give a school talk. It was there that, seeing the reaction of the children, he thought that he should spend more time showing his example of improvement.

“I was standing on the playground and a couple of kids came running up to me and said, ‘Jono, Jono, Jono, can you show us your hearing aid?’, ‘Jono, Jono, I live with my grandparents,’ ‘Jono, I don’t know to my mom and dad’, ‘Jono, I get bullied for A, B or C'”.

Right there on that playground, I said to myself, ‘I need to do this more.'”

For this reason, Lancaster has already starred in two documentaries and in the last two years he has been working on his first book, entitled Not All Heroes Wear Capes (in Spanish, “Not all heroes wear a cape”).

“It’s about the heroes I’ve met in my life and how I finally I became my own ultimate hero. Because the truth is that my life has been filled with a lot of love and a lot of adventure.”

Causes and symptoms of Treacher Collins syndrome

Also known as Franceschetti-Zwalen-Klein syndrome or mandibulofacial dysostosis, this rare condition is named after Edward Treacher Collinsa London ophthalmologist who first described this malformation in the medical literature in the early 1900s.

The British National Health Service says it is a congenital condition that, depending on the mutated gene, can be inherited from one or both parents.

The symptoms are highly variable and can be severe or moderate -almost imperceptible-, which means that there is an underreporting of cases. In any case, it is estimated that there is 1 case in every 50,000 births.

It is usually noticeable on the cheeks, eyes, ears, and jaw..

It can also mean that the baby is born with a cleft palate and has difficulty breathing and feeding. Also, abnormalities in the structures of the outer and middle ear can lead to hearing loss and speech difficulties.

Children with it must have medical monitoring and may have to undergo surgery to correct birth defects.

Brain and behavioral abnormalities such as microcephaly and psychomotor retardation have also occasionally been reported, notes the US National Organization for Rare Disorders.

Source: Elcomercio

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