Parenting

Toddler Diagnosed With Rare Uncombable Hair Syndrome

uncombable hair syndrome

After getting their son’s rare diagnosis, his parents are proud — of him and his unique locks

When Katelyn Samples welcomed her second son in 2020, little Locklan was born with her dark hair. But in the 16 months since, Locklan Samples’ hair has gone from jet-black with a fine texture to uncontrollable shocks of white-blonde that stands out — and brings joy — wherever he goes.

“People immediately smile when they see Locklan,” Samples tells Scary Mommy, and she says that eager onlookers often ask to touch his hair. She says that all of this public attention seemed to take off during the summer of 2021, when he was around 10 months old.

But as people around them began taking notice of his unique hair, the family, from Roswell, Georgia, didn’t immediately realize there was anything different about Locklan. His hair didn’t start to change from the typical baby hair he was born with, like his older brother Shepherd, into a light “peach fuzz” until he was 6 months old.

“At first we just thought he was going to have curly hair… but then it kept growing, couldn’t be tamed,” she says.

And from there, Locklan’s locks took off — and so did his new nickname: Lock.

“We were like, huh, what is this?” Samples told People. “We knew it was different, but didn’t know exactly how. And then it kept growing and growing.”

By the time Lock was 9 months old, his soft white hair had a new texture with a stubborn mind of its own, and started sticking straight up. “I was going to my mom and asking her, ‘Did I have hair like this,” Samples recalled to Fox 5. His hair was even difficult to tame when wet, making just washing — let alone combing it — a difficult task.

“His hair is hard to get saturated with water,” she tells Scary Mommy, and, “once it dried, it immediately pops back up! I only wash it if absolutely necessary.”

And with his spiky, wild white hair came the looks whenever they are out in public. “We can’t go anywhere without someone making a comment, whether it’s the park or Publix,” she told Fox 5. “People come up to us … They’re very curious about his hair.”

But with this new attention from strangers, which is all mostly kind his mom says, also came answers for Lock’s family.

“A stranger direct messaged me on Instagram and asked me if Lock has been diagnosed with uncombable hair syndrome (UHS) — that’s how I first learned of it,” Samples tells Scary Mommy. Since she hadn’t heard of this type of extremely rare heredity condition, that Samples describes as one-in-a-million, she immediately started googling it while making an appointment with his pediatrician.

But despite his mom’s growing concerns, Lock didn’t seem to mind the newfound attention. “Even at the doctor’s office, it’s almost like an episode of House; there’s always a lot of doctors in the room, and he just eats it up,” she told Fox 5. They were eventually sent to a specialist at Emory University Hospital in Atlanta where doctors at dermatologist’s office took samples of his hair.

“She said she’d only seen this once in 19 years,” Samples told People. “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 that’s when pathologists officially diagnosed Lock and added him as one of only 100 known cases of uncombable hair syndrome. “Lock’s hair is a genetic condition,” she tells Scary Mommy. “Every strand of Lock’s hair grows outward with a bend in it — the root of his hair isn’t round like the rest of us, it’s triangular.”

Samples admits that first hearing her baby being diagnosed with a medical condition — even one that just seemed to impact his hair — was an initially hard to process. “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 told People.

But as she digested the news, Samples also found comfort in it. “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 said. And thankfully, this still holds true — she tells Scary Mommy that Lock is still “otherwise perfectly healthy.”

Samples has also since learned that Lock’s unique condition doesn’t affect his health and just means that his dandelion-like hair is not only incredibly fragile but also a trigger for strangers to approach with comments — both positive and negative. “We were at Waffle House on Thanksgiving and an older woman looked at us and said, ‘Oh, my gosh, that baby wakes up every day with a bad hair day,'” Samples told Fox 5. “But kids are like, ‘That baby has the coolest hair!’ Kids are into it. They love it.”

So with all of this unsolicited attention and an official diagnosis, Samples decided to share Lock’s story. “My husband is the creative one and came up with his Instagram handle,” she says. “We wanted to spread awareness and joy with Lock’s story.”

His adorable account, @uncombable_locks, has taken off since they first started posting last August as strangers follow his journey and learn more about life with uncombable hair syndrome.

“It’s been amazing connecting with other parents across the globe who have kids with hair like Lock but doctors haven’t been able to give them answers, and locks IG has helped them,” she says.

As Samples sifts through the thanks from parents who thought their child was the only one who had hair like this, she says she’s also flooded with other messages. “We get a lot of comments about Lock being a little rock star — which he totally is,” she says. Other common comments are about him being “full of static” and “we get a lot of comparisons to Billy Idol, Donald Trump, and Boris Johnson. “They actually think Einstein had UHS,” she adds.

Samples says there’s a chance Lock might outgrow his statement hair during puberty, but instead of hoping that he does, she and her husband, Caleb, appreciate this unique part of their son — and are teaching him the exact same thing. “I think it’s cool to have something that lets you stand out,” she told Fox 5. “We really consider it a blessing.”

Which is why she makes sure that most importantly Lock, but also everyone around them knows: We’re so proud of it,” she says. “We celebrate each of our kids’ individuality.”

So the only common comment from strangers that she doesn’t “love” is when people say to her child, “I’m sorry you have that hair!” Because as this proud mama puts it: “We’re not sorry at all!”