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Girl with 'uncombable hair syndrome' rocks it in style: 'I look like a lion with a crazy mane'

'As a family, we wouldn't change her for the world,' her mother wrote. 'She has the spunk, the sass, and the personality to make a difference.'

Girl with 'uncombable hair syndrome' rocks it in style: 'I look like a lion with a crazy mane'
Cover Image Source: Instagram/Shilah Madison Calvert-Yin

Editor's note: This article was originally published on September 21, 2021. It has since been updated.

A young girl from Melbourne, Australia, is inspiring thousands across the world by embracing her unique hair texture caused by a rare genetic condition. Shilah Madison Calvert-Yin, 11, was born with uncombable hair syndrome, a condition that is characterized by dry, frizzy hair that cannot be combed flat. Although this has made her the subject of public ridicule and gawking ever since she was a baby, Shilah has learned to rock her mane with utmost confidence and hopes to provide visibility to others affected by the condition. "I get teased a lot and called 'fluffhead' at school - it's not nice," she told Daily Mail. "I personally like it now but at the same time, I hate it - especially when there's wind! Let's just say, I can't see!"


Shilah's mother, Celeste, revealed she knew her daughter was different when she was just three months old. "Her brown baby hair had fallen out as it should but this weird fuzz started to come through and grow straight up. It was like nothing you'd ever seen before! It didn't seem to calm or settle, but I didn't really think anything of it until people started to make comments." In a Love What Matters submission, the mother-of-two shared how strangers would react to her daughter's hair.


"'What's wrong with her hair?' they would say. It was hurtful and sometimes quite rude, but I'm sure they were just being ignorant and insensitive," Celeste wrote. "Then there were the people who were complete strangers that would peer into her stroller, stare at her and make comments about her everywhere we went. 'Looks like she stuck her finger in the power socket,' was a frequent comment. Often people would even ask to touch her hair or just come up out of the blue and touch her hair. As a parent, this would really annoy me and my husband, and we would often make it known that it was not okay. 'Do you mind? She is just a baby and we don't go around touching your kids.'"


"I remember one day a stranger likened her to Doc Brown from 'Back to the Future' as she was wearing a lab coat. 'Your daughter looks just like Doc Brown, the guy in the movie. The crazy scientist guy!' Others often said she had 'hair like Albert Einstein.' They were spot on and it did become a bit of an in-house giggle for us. She did have that crazy wispy hair like Doc and Einstein but probably not what any little girl wanted to be likened to," she continued. As Shilah grew older her hair became dry and more fragile, resulting in it becoming matted overnight.


The young girl's frustration with her hair reached its peak at around age four when, angry she couldn't pull it back into a ponytail, Shilah chopped off some of her hair. "I was more distraught than she was, she decided that she was sick of her hair sticking straight up but when she cut short it the opposite happened and it became more spiky," said Celeste. "That's the only haircut she's ever had!"


Fortunately, the youngster gradually embraced her appearance. "She'd make sweet remarks like, 'Just call me fuzzy. Some days I look like a lion with a crazy mane.' Both Shi and her brother Taelan were in childcare when I returned to work, which I think really helped. Kids truly do just say what they are thinking, and this helped shape and strengthen Shi," her proud mother revealed.


"She was confident and sassy and quickly learned how to work her uniqueness to her benefit. She would tell them she was 'magical and special' and they were just 'normal and boring,'" she added. Shilah wasn't diagnosed with uncombable hair syndrome until she was seven-year-old when the anesthetist at her dentist's office, recognized the signs.


"Her dentist was concerned about how weak her teeth were and the anesthetist who was scheduled with Shilah was the one who noticed her hair and told us about uncombable hair syndrome," said Celeste. "I was shocked, teary, and excited at the same time- finally there was an answer to all those years of questions!"


"What were the chances, out of all the doctors in Melbourne, that we would meet this one? She told us she had never heard about anyone in Australia with it and never expected to meet a child like Shilah - she's one-in-a-million," she added. "You panic when you hear doctors talk about cell mutations but fortunately Shilah has only broken one bone in her life and now we are careful about her bones and teeth." Shilah now has an Instagram following of over 16.8k followers.


"As a family, we wouldn't change her for the world," wrote Celeste. "We see big things in her future. She has the spunk, the sass, and the personality to make a difference. I would be fibbing if I said it's been easy for her, but if anyone could own the way they look and deal with the comments and stares – she certainly has. 'You just have to love yourself, mom. Who cares about everyone else?', she recently told me. She is our inspiration!!!"

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