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Like many babies, Locklan Samples was born with hair, and like many babies that hair didn’t last long. Except Locklan’s dark locks were replaced with a shock of fuzzy, blond hair. His parents had no idea that his crop of unique hair made him one of only 100 known cases of a very rare syndrome.

By six-months-old, Locklan had completely lost his dark hair and by nine months, his hair was a white-blond. “We were like, huh, what is this?” Locklan’s mum Katelyn told PEOPLE. “We knew it was different but didn’t know exactly how. And then it kept growing and growing.”

Uncombable Hair Syndrome 4

Uncombable Hair Syndrome 2

Uncombable Hair Syndrome 1

Uncombable Hair Syndrome

While Locklan’s older brother Shep also has striking blond hair, his is straight and smooth. And while his parents knew there was something different about their youngest child’s hair, it was a well-meaning stranger who led them to a diagnosis.

“People were definitely noticing it,” Katelyn said.  Then she received a message on Instagram from a stranger asking if Locklan had been diagnosed with uncombable hair syndrome.

“I was like, oh my God, what is this? Is something wrong with my baby? I went into tailspins on Google.”

The 33-year-old mum-of-two contacted her pediatrician, who referred her onto a specialist.

“We went to see her and she said she’d only seen this once in 19 years. She didn’t think it was uncombable hair syndrome, because of how rare it is, but they took samples and a pathologist looked at it under a special microscope.”


After testing, it was confirmed that Locklan does indeed have uncombable hair syndrome – a condition so rare that there are only 100 known cases. Katelyn says the diagnosis has taken some adjusting. but Locklan’s future is bright.

“You’re just going about your day thinking everything’s fine and that your kid might have curly hair, which does run in the family. And then to hear that there’s a rare syndrome associated with your kid — it was crazy.

“They said because he was developing normally in every other area of his life, that we didn’t need to be worried about anything else being a concern.”

Katelyn has since started an Instagram account called Uncombable Locks to raise awareness of the rare condition, and help educate other parents. And she hopes it helps Locklan, now 16-months-old, in the future.

“I would say that 98% of people are so kind and love it. They say he’s like a little rock star. It brings a smile to peoples’ faces. And right now when he’s little, he loves the attention and doesn’t mind it. But with both of our kids, we want to teach them to be confident in who they are, no matter what makes them different. And that it’s cool to stand out a little bit.”

What is uncombable hair syndrome?

Uncombable hair syndrome is a condition that develops in childhood – usually in babies to three-year-olds, but it’s even been reported as appearing in children as old as 12.

It causes dry, frizzy hair that’s impossible to comb flat, and there’s no treatment. However it usually improves by the time children reach puberty.

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  • Thank you for sharing. I never heard of it before

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  • That’s an interesting syndrome. I hope it isn’t associated with any other health problems for him.

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  • Wow ???? never heard of this disease. But he is so cute, I just want to hug him.

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  • never heard about it before, but he looked so cute

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  • I’m a hairdresser and I haven’t heard of this. It looks cute but when he is older he could cut it short, use straightener??, or maybe chemically straighten it. It would be interesting to see if anything like that would help.

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  • Oh the poor little bub. Never heard of this before.

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  • I’ve never heard of this condition before but it doesn’t matter because he looks healthy and so happy.

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  • He looks adorable. I like the look and it can always be cut really short.


    • I agree, I nice short cut is easy and looks great. When it would have been a girl you can let it grow and braid it

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  • That costume was on point!!!!! Very interesting to know how rare it is. At least with guys though they like their hair clean and short (well… not all) but I was just imagining myself and I can barely tame my frizzies now.

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  • Wow! This is not something I have ever heard of. He is gorgeous and seems so happy. Let’s hope he learns to love his hair.

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  • Never ever head of this before.

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  • I’ve never heard of it! How crazy- at least he’s a boy and you don’t need to feel pressure to tame it into hairstyles.

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  • I’ve never heard of it before, luckily it doesn’t sound it’s a condition you have to worry about

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  • Oh wow thats the first I’ve ever heard of it. How interesting.

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  • Well I’m glad they finally explained it and it’s very self explanatory by the title. I’m not sure how you would hear uncombable hair syndrome and spiral into a panic about there being something super wrong with your child…
    There are a world of life threatening diseases out there, and frizzy hair doesn’t even compare to it!
    And before people go getting upset about it, I have a child who has a genetic disorder that in severe cases CAN be fatal. I had never heard of it before her diagnosis, and a lot of people haven’t heard of it either… thankfully my child only has a mild case so will not be the one in four who doesn’t make it

    Reply

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