REAL LIFE

Rare genetic syndrome gives adorable kid INCREDIBLE uncombable locks

'I love my hair, Mummy!'
Supplied

Celeste Calvert-Yin, from Melbourne, Vic, always knew her little girl, Shilah, was special! Here, she tells her story in her own words. 

Bursting with energy, my girl, Shilah, eight, bounded through the shops. 

‘Look at her!’ strangers gawked, nudging each other as she skipped past, totally unaware. 

Decked out in rainbow leggings, a tutu and furry pink earmuffs, my tiny fashionista cut a fine figure.

But her beautiful blonde locks had stolen the show yet again!

Until she was three months old, my girl had a dusting of brown hair. 

Falling out, it was replaced with a strawberry blonde afro, which stood straight up. Strangely, it wasn’t coarse, at all, but soft and fluffy – like a halo.

https://www.instagram.com/p/BXp0Zu2gn3G/?taken-by=shilahmadison
https://www.instagram.com/p/BXKbn-bg3tQ/?taken-by=shilahmadison

A happy bub, Shilah was smiley and cheerful. But when I’d pin her hair back with pretty clips, she’d rip them out along with a clump of hair.

‘Do they hurt, sweetie?’ I soothed.

Shilah’s scalp seemed to be very sensitive, so we left her gorgeous mop untamed. 

But by the age of four, 
my girl started to feel self-conscious about her locks.

As I lugged in the groceries one day, my hubby Michael stopped me.

‘You’re going to be really upset…’ he started.

‘What happened?!’ I burst out, as I saw Shilah’s new do.

Pulling her hair into a ponytail, she’d hacked off any tresses that escaped the hairband.

Making a big scene, I rushed her to 
the hairdresser.

After that, Shilah wouldn’t leave the house without wearing a hat or scarf.

I’ve scarred her! I fretted.

She was so embarrassed and it broke my heart. How could I make her realise just how special she was?

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Watching Frozen, my girl stared longingly at Elsa’s pretty golden plait.

‘Mummy, why can’t I have hair like that?’ she asked.

What do I say to her?! I panicked, racking my brain.

‘You’re like Rapunzel, sweetie. You have magical hair,’ I explained.

After that, Shilah began to embrace her individuality, instead of shying away from it. 

Fiercely independent, she’d pick her own clothes. I bit my tongue at her trackies under a skirt, or a unicorn headband, as she wore them with such pizzazz.

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Out and about, strangers still stared, but Shilah didn’t care. However, when adults snapped a photo of her, I did.

‘Excuse me,’ I’d say. ‘That’s completely inappropriate!’

When she started school, we worried Shilah would be bullied. But, within a week, she’d charmed her entire class! 

Two years older, Shilah’s brother, Taelan, was her biggest advocate.

‘My sister’s beautiful,’ he’d say proudly to everyone.

https://www.instagram.com/p/BXEJZLuAUAy/?hl=en&taken-by=shilahmadison

Falling asleep in the car or lying on the couch, Shilah would end up with her hair like bird’s nest.

‘Ouch!’ she’d cry, as I teased it apart, strand by strand. 

Over time, we’ve learned how to care for Shilah’s mane, conditioning once a week and leaving it to dry naturally.

I had thought her hair was just a quirk, but then I made an incredible discovery when Shilah went to hospital for a dental procedure.

Shocked, one doctor kept glancing at her hair.

‘I think she has Uncombable Hair Syndrome!’ she said.

The doctor went on to explain it was a rare genetic mutation, characterised by disorderly silvery-blonde or straw-coloured hair, which can’t be combed flat.

She’s having me on! 
I scoffed.

https://www.instagram.com/p/BYt-xHOnclm/?taken-by=shilahmadison

Googling it that night, I was surprised to discover the syndrome was real. While most people have circular hair shafts, people with the condition have triangular shafts, causing their hair to grow slower than usual and stand on end.

Apparently, the syndrome can appear from any age between three months and 12 years and should become more manageable with age.

Amazingly, only 100 cases had been documented worldwide.

I always knew she was special! I smiled.

Now, we’ve started an Instagram account to share Shilah’s story. In just a year months, my girl’s gained nearly 14,000 followers!

Better yet, we’ve connected with other girls who also have the syndrome.

Daily, we’re inundated with kind messages from across the globe. But many suggest ways to fix Shilah’s hair.

While I appreciate that people are trying to help, it’s not broken!

‘I love my hair, Mummy!’ Shilah exclaims now and I couldn’t be prouder of her.

She’s been compared to Albert Einstein and Doc Brown from Back to the Future, but there’s no-one quite like her!

https://www.instagram.com/p/BWdlJvtg9_V/?taken-by=shilahmadison

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