Georgia toddler diagnosed with extremely rare uncombable hair syndrome

Sixteen-month-old Lock Samples has grown up sticking out.

Everywhere the Roswell, Georgia toddler goes, his mother Katelyn Samples says, he turns heads.

"We can't go anywhere without someone making a comment, whether it's the park or Publix," Samples says. "People come up to us, they ask to touch it. They're very curious about his hair."

Lock Samples was born with typical baby hair, just like his big brother Shepherd, who is 3 years old.

But, when he was about 6 months old, Katelyn Samples says, Lock's locks started to take off.

"I was going to my mom and asking her, 'Did I have hair like this," she says, laughing.

When they try to wash it Lock's hair, it was hard to get it wet.

"Then, as soon as we would dry it, it would not lay flat, even if we brushed it," she says.  "As soon as it dries, it pops back up."

Lock Samples

And the Roswell toddler doesn't seem to mind the attention he draws

"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," his mother says. 

Still, for months, the Samples didn't know why Lock's hair was doing this.

"And, then a stranger messaged me on Instagram," Katelyn Samples says.

That stranger told her Lock might have a kind of one-in-a-million heredity condition, known as "uncombable hair syndrome."

"I got nervous because I'd never heard of it before," Samples says.

She Googled it, then called his pediatrician.

"And, they were like, 'We know Lock, and we know his hair, but we can't really help you here, so we're going to send you to directly to a specialist,'" Samples remembers.

That is how they ended up at Emory University Hospital in Atlanta.


(Courtesy of Katelyn Samples)

"We went into the dermatologist's office and several other doctors came in," his mom remembers. "They took pictures of his hair, and they took samples of his hair."

After studying Lock's hair under a special microscope, a pathologist confirmed he has one of about 100 known cases of uncombable hair syndrome.  

"The hair strand is like a triangle shape and twisted," Katelyn Samples says.  "Every single individual strand is that way."

The Samples learned the syndrome doesn't affect Lock's health, and kids with it usually have fine, light-colored, dandelion-like hair.  

His mom says his hair is so fragile she cannot use gel or styling products on it without risking breakage.

Still, Samples says, this kind of wash-and-wear hair does come with some benefits

"The older one, we have to wrangle him down to get ready and do his hair and brush his teeth, but Locklan wakes up ready to roll," she says. 

They get a lot of comments, she says, most of them friendly, but not always.

"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,'"she says.  "But kids are like, 'That baby has the coolest hair!' Kids are into it. They love it."


(Courtesy of Katelyn Samples)

Lock Samples even has his own Instagram account, @uncombable_locks, with about 3,100 followers.

Katelyn Samples has been touched by the response to his photos.

"It's the amount of parents who've reached out to me, saying, 'Thank you for sharing your story.  I thought my child was the only one to have hair like this,'" she says. 

There is a chance that Lock Samples will outgrow uncombable hair syndrome once he reaches puberty.

If not, Katelyn Samples says, they are okay with that.

"I love it," she says. "We're so proud of it.  I think it's cool to have something that lets you stand out. "We really consider it a blessing."