"It's cool to stand out a little bit."
When 16-month-old Locklan Samples was born, his hair was just like his mom's—jet black. But, by the time he was 6 months old, that dark hair was replaced by what his mom Katelyn and her husband Caleb affectionally called "peach fuzz."
"We were like, huh, what is this?" she told PEOPLE of Locklan's newly-blond, soft hair. "We knew it was different, but didn't know exactly how. And then it kept growing and growing."
By the time the boy, nicknamed Lock, was nine months old, his hair white-blonde, super soft and sticking straight up out of his head. It matched his 3-year-old brother Shep's hair in color, but it was very different in texture.
"People were definitely noticing it," Katelyn, 33, from Roswell, Georgia, says with a laugh. Around the same time, she got a message on Instagram from a stranger who asked her 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."
The mom frantically 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 sure enough, that was the case. Once the specialists looked at the structure of Lock's hair, they were able to confirm that it was indeed 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.
The fact that Lock had this syndrome came as a shock to everyone. "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.
But the syndrome seems to affect only 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.
Thought Katelyn also tried to learn more about the condition, due to so few cases she had access to very little information. She did, however, 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."
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."
Katelyn knows that as her son grows up, there will be people who comment on his looks, but she hopes she can teach him to love his uncombable hair and remain unbothered by what people say.
"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."
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Cover Image Source: Instagram | @uncombable_locks
