Girl with fuzzy hair embraces her condition

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All children born are unique, but some stand out more than others – that’s just the way it is. But that certainly doesn’t mean that there is something “wrong” with toddlers who look different. Often there is an explanation behind it, as in the case of Shilah Madison Calvert-Yin.

But for Shilah, it would take years before everyone finally understood that she had a very unusual condition that caused her eye-striking fuzzy locks…

Shilah Madison Calvert-Yin, from Melbourne, Australia, is mostly just like any other 12-year-old. She’s a happy-go-lucky girl who loves laughing, playing with her friends, and learning new things in school.

If you look at this precious young lady today, you would never be able to guess that she has gone through a very tough period in life and that people used to tease her and call her “fluffhead.”

When baby girl Shilah was born, her parents were so excited to add a little girl to the family. Her mother, Celeste, had a perfectly normal pregnancy, and Shilah was born at 36 weeks.

The gorgeous little girl was born with soft brown hair like her older brother Taelan. But after a while, her parents could see how it began to fall out and was replaced with blonde locks.

”She was picture perfect, blonde hair, blue eyes, so cliché,” Celeste told Love What Matters.

As Shilah was growing, her parents noticed that her hair was growing straight up instead of down, it was also very soft and fragile. This started when their daughter was three to six months old.

”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.

As many probably know, parents often compare their children with others. Since Shilah’s hair caught the eye of everyone, the parents often had to answer questions when they went out with their little daughter.

Sadly, her parents got all kinds of comments when they were out from passersby, who asked them, “what’s wrong with her hair?” Strangers also took the liberty 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.

This little girl and her parents had to endure a lot – but Shilah remained strong and positive for most of the time. At childcare, she tell the other kids that she was “magical and special” and they were just “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.

Still, some questions needed answers. Celeste and her husband had no idea why their daughter’s hair was so different, and they felt it would make it a lot easier for the family if they knew why their daughter’s hair grew straight up.

They had some theories, however.

“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.”

But at times, things were very difficult for Shilah. She dreamt of having long hair like her friends. She wanted a ponytail – which was impossible for her. And when she was four, Shilah got so angry and frustrated that she decided to cut her own hair.

As a result, she had to wear a headscarf for a while.

”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 mom also explained that no one knew what to do with her daughter’s fuzzy and fragile hair when they went to hairdressers. Finally, some recommended she go to a salon specialized in Afro hair.

But that didn’t help.

”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.”

As the years passed, Celeste and Shilah learned to live with it and chose to embrace all comments they received.

“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.

For some time, people close to the family had suggested that Celeste take her daughter to a doctor to find out if some condition caused Shilahs fuzzy hair. But the parents saw no need until Shilah went to the hospital for her teeth.

Once there, a doctor approached Celeste and asked the mother if she was aware of the rare disorder 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.

UHS is extremely rare; according to the Genetics Home Reference, there are only 100 known cases in the scientific literature. The condition usually appears at a young age – often before the age of 3. But it can occur later in life as well.

When Celeste got the news from the doctor, she was overwhelmed.

“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.”

”You panic when you hear..”

Her condition means her hair grows differently and ‘heart-shaped’, because it’s missing a protein. Fortunately, the disorder is not going to cause any other medical conditions. Other than her teeth having weakened enamel, Shilah is perfectly healthy.

”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.

After her parents were told her condition they wanted to share it with others to help others around the world. And it has helped.

Through her Instagram page they have reached over 17,000 people around the world.

”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 is now 12 years old, and she loves the simple things in life, like fishing, crafting, drawing, and spending time with her family.

Today, she encourages other kids to love what makes them different.

“There is nothing wrong with being different. If other people stare, it’s because they’re jealous,” Shilah says.

Her mom says their daughter is a daily inspiration, but the last years have been a bit tougher for her because Australia and Melbourne have had hard lockdowns, which has really affected everyday life.

I think Shilah’s blonde locks are beautiful! She is an inspiration to so many around the world by bravely sharing her journey and putting herself out there.

Help us let this little girl know just how special she is by sharing her story.

 

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