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Adorable toddler diagnosed with 'uncombable hair syndrome' is winning hearts

'They say he's like a little rock star. It brings a smile to people's faces,' said the toddler's doting mother.

Adorable toddler diagnosed with 'uncombable hair syndrome' is winning hearts
Cover Image Source: Instagram/Locklan Samples

When Locklan Samples was born, he had jet-black hair similar in color to his mom Katelyn's hair. However, by the time he was 6 months old, his original dark hair was replaced by what's affectionally called the "peach fuzz" by Katelyn and her husband, Caleb. "We were like, huh, what is this?" the toddler's mom told PEOPLE of her son's newly blond, soft hair. "We knew it was different, but didn't know exactly how. And then it kept growing and growing." Surprisingly, Locklan's (nicknamed Lock) hair transformation was still underway. By the time he turned 9 months old, Lock's hair was white-blonde, super soft and sticking straight up out of his head. Although it matched his three-year-old brother Shep's hair in color, their hair textures are polar opposites.



 

"People were definitely noticing it," Katelyn added with a laugh. This was when the 33-year-old from Roswell, Georgia, got a message on Instagram from a stranger who asked if Lock had been diagnosed with "uncombable hair syndrome." According to MedlinePlus, "Uncombable hair syndrome is a condition that is characterized by dry, frizzy hair that cannot be combed flat. This condition develops in childhood, often between infancy and age 3, but can appear as late as age 12. Affected children have light-colored hair, described as blond or silvery with a glistening sheen. The hair does not grow downward but out from the scalp in multiple directions."



 

"I was like, oh my god, what is this? Is something wrong with my baby?" Katelyn said of when she first heard of the condition. "I went into tailspins on Google." The concerned mom immediately got in touch with 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 recalled. "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."



 

A closer look at the structure of Lock's hair confirmed that it was uncombable hair syndrome. Lock is just one of 100 known cases of the condition. Katelyn admitted that hearing of Lock's diagnosis 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," she said.



 

Fortunately, as of now, 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," Katelyn said. Although the family tried to gather more information about the condition, since there are so few known cases in the world, there's very little information online or among specialists. She did, however, manage to 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 said. "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." For now, the loving mom is choosing to let 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."



 

As he grows up, Katelyn plans to teach him to love his uncombable hair. "I would say that 98% of people are so kind and love it," she said. "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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