February 28, 2022
A couple from Roswell, Georgia, recently told People magazine about their “brush with fate.”
When Katelyn and Caleb Samples celebrated the birth of their second child just 16 months ago, baby Locklan arrived with jet-black hair similar to his mom’s color. But by the time he was six months old, that dark hair was being replaced by what his parents 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 nine months, Lock’s hair was 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 could not be more different in texture.
“People we’re definitely noticing it,” Katelyn, 33, 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.”
Katelyn called their pediatrician, who said they had never heard of the syndrome and directed her to a specialist at nearby Emory University 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, indeed, 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.
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.
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.”
Research contact: @people