A mother learned her son had a rare genetic condition after a stranger sent her a DM about his hair

A mother is raising awareness about her one-year-old son’s rare genetic condition, uncombable hair syndrome.

Katelyn Samples, from Georgia, first learned about uncombable hair syndrome in July 2021 after she received a message on Instagram from a follower who had seen a photo of her youngest son, Locklan.

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

When 17-month-old Locklan was born, the newborn had dark, baby hair. But, as his new hair grew in, it began to resemble peach fuzz, Samples recalled.

After learning about uncombable hair syndrome, the 33-year-old mom called Locklan’s paediatrician, who was also unaware of the condition. After being directed to a paediatric dermatologist specialist at Emory Hospital in Atlanta, doctors were able to confirm Locklan’s diagnosis.

Uncombable hair syndrome, also known as spun glass hair, is an extremely rare condition characterised by very soft, silvery-blond hair with a fragile texture that grows in all directions.

According to the National Institutes of Health, cases may become apparent in children any time between the ages of three months and 12 years, and is caused by differences in hair shaft formation.

Locklan, nicknamed Lock by his parents, is one of 100 confirmed cases of uncombable hair syndrome in the world.

However, according to the baby’s mother, managing Locklan’s hair is actually quite low maintenance. Samples, who is also a mom to their three-year-old son Shepherd, washes Locklan’s hair about once a week using all-natural products.

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

Since Locklan was diagnosed with uncombable hair syndrome, Samples started sharing her son’s journey on social media, where she has been able to spread awareness and connect with others living with the same condition.

Samples first turned to Instagram, not only to share her son’s smiling photos, but also to be a resource for those with uncombable hair syndrome.

“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,’” she said. “Because there’s just not a lot of information out there.”

In a matter of weeks, Locklan’s Instagram page @uncombable_locks has grown from 3,000 followers to almost 17,000.

However, according to Samples, the greatest part about sharing Locklan’s journey is being able to spread some natural hair joy with others.

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