At a time when simply standing out can lead to a lot of bullying, a young girl from Melbourne, Australia has learned to embrace her uniqueness and is inspiring others to do the same.
Shilah Madison Calvert-Yin, 13, was born with uncombable hair syndrome, a rare genetic condition that results in a unique hair texture. The condition is characterized by dry, frizzy hair that cannot be combed flat.
As a child with uncombable hair syndrome, Shilah recalled, “I get teased a lot and called ‘fluffhead’ at school – it’s not nice.” But this girl is made from sterner stuff – she likens her hair to a lion’s crazy mane and has learned to rock her hair with utmost confidence.
She said, “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!”
Celeste, Shilah’s mother, revealed that her daughter’s hair became different when she was three months old. She shared, “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.”
Celeste said that a lot of people would even peer at Shilah in her stroller and say that it seemed as if the baby stuck her hand into a power socket.
There were a number of people who tried to touch Shilah’s hair, and Celeste and her husband had to set boundaries to show complete strangers that it was not okay to touch their baby in any way.
Shilah’s uncombable hair syndrome was also likened to Doc Brown, the scientist from the movie “Back to the Future,” and Albert Einstein.
At the time she did seem to have that same wispy hair, but it was probably not a comparison that any girl would want to hear. As Shilah grew older her hair became dry and more fragile, resulting in it becoming matted overnight.
Understandably, having uncombable hair syndrome must have been irritating. Shilah’s frustration with her hair reached its peak at around age four when, angry that she couldn’t pull it back into a ponytail, she just 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, Shilah has adapted to exceptional hair and gradually embraced her appearance. Celeste said, “She’d make sweet remarks like, ‘Just call me fuzzy. Some days I look like a lion with a crazy mane.’ Both Shilah 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 Shilah.”
Celeste added that Shilah quickly learned how to work her uniqueness to her benefit. She would tell others that she was magical and special, while they were just normal and boring.
Shilah was only diagnosed with uncombable hair syndrome at seven years old after a visit to her dentist’s office, where the anesthetist recognized the signs. Her dentist was concerned about how weak her teeth were.
The anesthetist scheduled with Shilah noticed her hair and told the family about uncombable hair syndrome. Celeste said, “I was shocked, teary, and excited at the same time- finally there was an answer to all those years of questions!”
The doctor remarked that she had never heard of a case of uncombable hair syndrome in Australia and never expected to meet a child like Shilah.
The doctor asked for permission to check Shilah to confirm that there weren’t any other symptoms that are often found in children with uncombable hair syndrome. Results showed that Shilah’s teeth had weakened enamel and break easily. Other than that, and the hair, Shilah is perfectly healthy.
Knowing that she is simply different, Shilah leads a normal life and wants to use her platform to provide visibility to others affected by uncombable hair syndrome.
Her Instagram has over 20.8k followers and she has connected with children and adults with similar experiences.
They look up to her and her positive attitude about being different and special and how she, as a little girl, takes on the world around her. Shilah always stressed, “There is nothing wrong with being different. If other people stare, it’s because they’re jealous.”
Celeste proudly stated, “As a family, we wouldn’t change her for the world. 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!!!”