When Tara Johnson welcomed her second son in 2020, little Leo was born with her dark hair. However, over the past 16 months, Leo’s hair transformed from jet-black baby locks to unruly tufts of white-blonde that turn heads and spark joy wherever he goes. “People can’t help but smile when they see Leo,” Johnson shares, noting that inquisitive strangers often want to touch his hair. This public fascination really picked up during the summer of 2021 when Leo was around 10 months old.
Initially, the family from Atlanta, Georgia, didn’t realize there was anything unusual about Leo’s hair. While his older brother, Max, had typical baby hair, Leo’s locks began to change around six months, evolving from soft baby hair to something wild and unmanageable. “At first, we thought he might just have curly hair, but then it kept growing and growing,” says Johnson. Eventually, Leo’s hair became known for its unique texture and its stubborn tendency to stand on end.
By the time Leo was nine months old, his fluffy white hair had developed a personality of its own, sticking up in every direction. “I went to my mom and asked her if I had hair like this as a child,” Johnson recalls. The challenges of taming his hair made bath time a struggle, as it was difficult to get it wet and even harder to comb through. “His hair is hard to saturate, and once it dries, it just pops back up! I only wash it if absolutely necessary,” she confides.
The attention they received during outings became a regular occurrence. “We can’t go anywhere without someone commenting, whether it’s at the park or the grocery store,” Johnson explains. This curiosity from strangers, mostly positive, eventually led to a significant discovery for the family.
A stranger reached out to Johnson via Instagram, inquiring if Leo had been diagnosed with uncombable hair syndrome (UHS). Intrigued, she began researching this rare hereditary condition, described as one-in-a-million, and quickly scheduled an appointment with his pediatrician. Fortunately, Leo took the attention in stride, delighting in the attention at the doctor’s office, where multiple physicians often gathered to examine him.
Eventually, they were referred to a specialist at a nearby hospital, where hair samples were taken and examined under a microscope. “The dermatologist told me she had only witnessed this condition once in her 19 years of practice,” Johnson says. Although the dermatologist initially hesitated to confirm a diagnosis of uncombable hair syndrome due to its rarity, further examination confirmed it. “Leo’s hair is a genetic condition,” she explains. “Every strand grows outward with a bend — the root is triangular.”
Initially, the diagnosis was overwhelming for Johnson, who had imagined her son simply had curly hair. However, she found solace in the reassurance that Leo was developing normally in all other aspects of his life. “They said we didn’t need to worry about anything else, and thankfully, he is otherwise perfectly healthy,” she states.
As she learned more about Leo’s condition, she discovered that it doesn’t affect his health — it just means his delicate hair attracts attention from curious onlookers. “We were at a diner during Thanksgiving, and an older lady remarked, ‘That baby wakes up with a bad hair day every day!’ while kids would exclaim, ‘That baby has the coolest hair!’”
Motivated by the unsolicited attention and the official diagnosis, Johnson decided to share Leo’s story online. “My partner is the creative one and came up with his Instagram handle,” she shares. They aimed to spread awareness and joy with Leo’s journey. His Instagram account, @leo_uncombable_locks, has gained popularity since they began posting last August, connecting with other parents of children with similar hair conditions.
“It’s been incredible to connect with families worldwide who have children like Leo but haven’t received answers from doctors. Leo’s account has been a source of support for them,” she shares. In addition to heartfelt messages from parents, Johnson receives plenty of lighthearted comments about Leo being a little rock star. “We often get comparisons to celebrities like Billy Idol and even comments about how he’s ‘full of static.’”
While there’s a possibility that Leo might outgrow his distinctive hair during puberty, Johnson and her partner, Ryan, embrace this unique aspect of their son. “We think it’s wonderful to have something that helps you stand out,” she remarks. “We consider it a blessing.”
Most importantly, they want Leo and everyone around to know: “We’re proud of it,” Johnson declares. “We celebrate each of our children’s individuality.” However, she admits that the one comment she doesn’t appreciate is when people say, “I’m sorry you have that hair!” As Johnson puts it, “We’re not sorry at all!”
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In summary, Tara Johnson has embraced her son Leo’s unique uncombable hair syndrome, turning a rare diagnosis into an opportunity to spread joy and awareness. Through social media, they connect with others and celebrate individuality, reminding everyone that it’s perfectly okay to stand out.
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