2023-05-26 23:32:00
“My birth parents were horrified by my appearance and abandoned me. 36 hours after my birth. That was difficult.” Jono Lancaster was born in West Yorkshire, in the north of England, 37 years ago, with a condition called Treacher Collins syndrome.
This syndrome is present since the baby is in the womb and is given for 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 have abnormalities such as flat or sunken cheekbonesvery small jaws, small or no ears, a downward slant of the slit between the upper and lower eyelids, and hair on the scalp that extends to the cheeks, according to the US National Library of Medicine.
“I don’t have cheekbones, so my eyes look this way,” Lancaster says on camera at the BBC. And while he touches his ears, he counts: “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 welcomed other children, all with different disabilities”Jono recalls.
Lancaster started school like any other child, but as a teenager he had to endure teasing and bullying from other students.
“Older kids pressed their eyes down, chanted about me“, 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 began to establish relationships, but that did not happen to me. That’s when I developed so much hate for my face, ”she says.
One day he wanted to contact 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 received a response signed by both: “We do not want any contact. Future attempts will be ignored. Being rejected by those two people again, it hurt.”
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.’” That’s why, Lancaster has already starred in two documentaries and in the last two years he has been working on his first booktitled Not All Heroes Wear Capes (in Spanish, Not all heroes wear capes). “It’s about the heroes I’ve met in my life and how I finally 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, ”he specified.
Also know as Franceschetti-Zwalen-Klein syndrome or mandibulofacial dysostosisthis rare condition is named after Edward Treacher Collins, a London ophthalmologist who first described this malformation in the medical literature in the early 1900s.
The British National Health Service says that it is a congenital condition which, depending on the mutated gene, can be inherited from one or both of the parents. 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. In addition, 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. Occasionally, brain and behavioral abnormalities were also reported such as microcephaly and psychomotor retardation, notes the National Organization for Rare Disorders in the United States.
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