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

There are only 100 confirmed cases of uncombable hair syndrome globally, and an adorable toddler named Locklan Samples is one of them.

The one-year-old’s mother, Katelyn Samples, from Atlanta, Georgia, has been raising awareness of the rare genetic condition by sharing photos of her son on Instagram.

Samples, 33, first heard about uncombable hair syndrome in July 2021 after a follower sent her a message on the platform, asking if her son had been diagnosed with the condition.

“At first I was like: ‘Oh my god, like, what is this?’” she told The Independent. “My biggest fear was that something was wrong with him, that maybe he was in pain with his hair.”

When Locklan was born, he had dark baby hair. But as his new hair grew in at around five months old, it began to look like “peach fuzz.” She and her husband, Caleb, 33, thought the bizarre texture was just a sign that it would be curly, like his two-year-old brother, Shepherd.

“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.”

After learning about the syndrome, Samples searched the internet for answers. She also called Locklan’s pediatrician, who was unaware of it. They directed her to a pediatric dermatologist specialist at Emory Hospital in Atlanta, and doctors were able to formally diagnose him.

“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,” she said. “And then to hear that there’s a rare syndrome associated with your kid — it was crazy.”

The doctor told her she hadn’t encountered a case of uncombable hair syndrome once in the 19 years she had been practicing.

Also known as “spun glass hair,” people with uncombable hair syndrome have extremely soft, straw-colored hair with a dull texture that grows in all directions, making it impossible to comb down or flatten.

The condition usually affects children between the ages of three months and 12 years and is caused by differences in hair shaft formation.

Uncombable hair syndrome tends to improve into puberty or adulthood. Fortunately, Locklan is developing normally in every other way, and doctors told the family there was no need to be concerned.

Samples said Locklan’s hair is fragile and could get tangled and matted easily, so managing it is a bit different. She only washes his hair about once a week using all-natural products unless he plays in the dirt. It also doesn’t get greasy as much.

“He kind of wakes up ready to roll,” she said. “If I don’t have to mess with it, I just try not to.”

Locklan’s hair draws a lot of attention when they go outside. People often ask to touch it, which is OK with his parents as long as they ask.

Since being diagnosed with uncombable hair syndrome, Samples has been sharing Locklan’s journey on social media. She hopes to spread awareness about the condition and connect with other people experiencing the same.

“We were like: ‘Let’s share him, let’s share his story, and kind of be a resource for other parents that might find themselves in the same boat that my husband and I were in,’” Samples said. “Because there’s just not a lot of information out there.”

Within weeks, Locklan’s Instagram page grew from having 3,000 followers to over 17,000.

Samples said the best part about sharing Locklan’s story is being able to spread some joy with others.

“Getting the messages that say: ‘Seeing him really made my day,’ that is incredible,” she said.

Follow the adorable Locklan Samples on Instagram.

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