Every child is special, but some stand out more than others. That doesn’t imply there’s something “wrong” with visually distinct toddlers. A particular baby, Shilah Madison Calvert-Yin, looked different than the rest…
Shilah’s odd ailment, which resulted in her distinctive fuzzy locks, wouldn’t be recognized as the reason until years later.
Shilah Madison Calvert-Yin of Melbourne, Australia is a typical 12-year-old girl. She’s a joyful young lady who finds equal joy in giggling with her pals and expanding her knowledge at school.
You would never know by looking at this lovely young kid today that she has been bullied and called a “fluffhead” in the past.
Her parents were overjoyed to welcome a newborn girl into the family when Shilah was born. Shilah was born at 36 weeks after a healthy pregnancy for her mother, Celeste.
The beautiful baby girl, like her older brother Taelan, was born with naturally supple dark hair. But her parents saw that it was gradually falling out and being replaced by blonde locks.
”She was picture perfect, blonde hair, blue eyes, so cliché,” Celeste told Love What Matters.
Shilah’s parents noted that as she was growing up, her hair was growing vertically instead of horizontally and was unusually delicate and brittle. This started happening between the ages of three and six months, when their daughter was an infant.
”It didn’t seem to calm or settle, but I didn’t really think anything of it until people started to make comments,” Celeste told Daily Mail.
It’s common knowledge that parents constantly hold up their children to the standards of others. The parents of tiny Shilah were constantly bombarded with inquiries by strangers whenever they went out with her because of her unique hair.
When her parents went out in public, unfortunately, they were subjected to several questions from strangers about “what’s wrong with her hair?” Many random people also felt free to touch Shilah’s hair.
Her mom Celeste, who works as a teacher, explained how it felt: “It was hurtful and sometimes quite rude, but I’m sure they were just being ignorant and insensitive.”
“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,” she told Love What Matters.
Despite all that Shilah and her family went through, she kept her optimism and strength of character. She brags to the other kids at daycare that she is “magical and special” while they are “normal and boring.”
“She’d make sweet remarks like, ‘Just call me fuzzy. Some days I look like a lion with a crazy mane,” her mom said.
There were still some mysteries to be solved. Celeste and her husband were at a loss to explain their daughter’s unusual hair growth pattern, and they felt that knowing the cause would make life much simpler for their family.
However, they did speculate.
“We just assumed it was a gene from our family history and that was just that. So, we told people that perhaps it was a throwback to one of our family histories and people were okay with this explanation. Or I just said she was ‘blessed with her hair and born to be noticed.’ That was easier for kids to understand.”
However, Shilah did face some severe challenges. She always wished her hair was long like her friends’. She insisted on having a ponytail, despite the fact that she could never pull one off. When Shilah was four years old, she reached an emotional breaking point and cut her own hair in a fit of rage.
Therefore, she had to cover her hair for a bit.
”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. That’s the only haircut she’s ever had,” Celeste said.
The mother added that when she took her kid to the hair salon, no one understood what to do with her daughter’s fluffy, brittle hair. One last piece of advice was that she visit a salon that specializes in Afro hair.
But that wasn’t much better.
”Her hair is not like African hair; it is still very soft and doesn’t need oil or a deep condition, and any heat treatment will break it.”
Celeste and Shilah eventually adjusted to the constant stream of criticism and decided to take it all in stride.
“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,” Celeste told Love What Matters.
People close to the family had been urging Celeste to see a doctor about Shilah’s fuzzy hair for some time. Until Shilah needed dental work done at the hospital, however, neither set of parents found a reason to take her there.
When they arrived, a doctor approached Celeste’s mother and inquired whether she had heard of Uncombable Hair Syndrome (UHS).
“The doctor explained that UHS was caused by a gene mutation and it involves silvery blonde or straw-colored hair that stands up from the scalp and can’t be combed flat. The doctor had researched UHS but had never met a child with the condition.”
There are fewer than one hundred documented cases of UHS, according to the Genetics Home Reference. Early onset of the illness is common, commonly occurring in children under the age of 3. However, it’s not limited to childhood.
Celeste was devastated after hearing the doctor’s prognosis.
“I was shocked, teary, and excited all at the same time, finally a possible answer to all those years of questions. The doctor was just as excited.”
Afraid of what you could hear, you immediately.
Her ailment causes her hair to develop abnormally and in a ‘heart-shaped’ manner due to the absence of a protein. To our great fortune, this illness does not appear to have any secondary health consequences. Shilah is in excellent health other than some enamel wear on her teeth.
”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,” Celeste told Daily Mail.
Her parents, after learning of her illness, wished to spread the word in the hopes of assisting others. This has been beneficial.
They have touched over 20,000 people all across the world through her Instagram profile.
”People are constantly reaching out for advice and sending photos of their kids in the hope that they too may have found the answer. This is truly humbling,” her mom said.
Shilah, who is now 12 years old, finds great joy in doing the things that most people take for granted, such as going fishing, making things, painting, and hanging out with her family.
She now actively promotes the idea that students should embrace their unique qualities.
“There is nothing wrong with being different. If other people stare, it’s because they’re jealous,” Shilah says.
Their mother adds that her daughter is an inspiration to her every day, but that the last few years have been difficult because of the severe lockdowns in Australia and Melbourne.
Shilah’s blonde hair is stunning, in my opinion. By sharing her story and putting herself out there, she has become an inspiration to people all around the world.
Please spread the word so that this little child knows how truly remarkable she is.