Toddler Diagnosed with Rare Uncombable Hair Syndrome: 'It Brings a Smile to Peoples' Faces'

Locklan Samples
Locklan Samples

Locklan Samples/Instagram Locklan Samples

When 16-month-old Locklan Samples was born, he had jet-black hair not too far off from his mom Katelyn's color. But by the time he was 6 months old, that dark hair was replaced by what Katelyn and her husband Caleb affectionally called "peach fuzz."

"We were like, huh, what is this?" she tells PEOPLE of Locklan's (nicknamed Lock) newly blond, soft hair. "We knew it was different but didn't know exactly how. And then it kept growing and growing."

By 9 months, Lock's hair was white-blond, super soft and sticking straight up out of his head. It matched his 3-year-old brother Shep's hair in color, but could not be more different in texture.

"People were definitely noticing it," Katelyn, 33, from Roswell, Georgia, says with a laugh. That's also when she got a message on Instagram from a stranger who asked if Lock had been diagnosed with "uncombable hair syndrome."

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

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Katelyn called their pediatrician, who said they had never heard of the syndrome and directed her to a specialist at nearby Emory Hospital.

"We went to see her and she said she'd only seen this once in 19 years," Katelyn recalls. "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."

And after looking at the structure of Lock's hair, they were able to confirm that it was uncombable hair syndrome, an extremely rare condition that causes the hair to grow with a very soft and easily breakable texture. Lock is one of just 100 known cases of the condition.

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Hearing that Lock had this syndrome was a shock at first.

"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," Katelyn says.

Thankfully, the syndrome only seems to affect Lock's hair.

"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," she says.

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Katelyn tried to learn more about the syndrome, but with so few cases, there's very little information online or among specialists. She did, though, find a Facebook group of parents of kids with the syndrome or people who have it themselves.

"That's been a great source of comfort, and we share pictures and talk about different things," she says. "It's cool to see how the older kids' hair has changed over the years — for some people it does not go away, and for others it becomes a little bit more manageable."

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Right now Katelyn lets Lock's hair "just be in its free form."

"I hardly have to wash it, unless he's literally playing in the dirt, because it doesn't get greasy," she says. "It's incredibly soft, and people want to touch it all the time. I hardly brush it, because it's very fragile. I just try to be very gentle with it and not mess with it unless I have to."

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And as Lock grows up, and the inevitable comments and questions about his hair continue, Katelyn wants to teach him to love his uncombable hair.

"I would say that 98% of people are so kind and love it," she says. "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."