Every person on the planet has had at least one day where they wake up with their hair standing on end and, no matter how much they brush it, it won't go back to normal. But what if your hair was always like that? What if your hair was literally uncombable?
As unrealistic as this sounds, uncombable hair syndrome is a very real thing, and something that has been documented in about only 100 people worldwide.
Taylor McGowan is one of the few people in the world who have this rare condition, her hair not growing downward, but instead out from the scalp in multiple directions. Yet, although her hair difficult to style, the 18-month-old looks incredible.
"Her hair looks amazing, like she’s a mini Albert Einstein," her mom, Cara McGowan, told BuzzFeed News. "It stands completely on end... It can be placed in a ponytail that will often stick straight up through the top of her head. We’ve tried dozens of products at this point."
So, how does this condition exist? Uncombable hair syndrome is a result of inheriting two copies of a gene mutation, one from each parent, that changes the shape of the hair shaft.
Taylor's family, who live outside of Chicago, first noticed that something was different when she was around four to six months old. "It was a little unique, it was fuzzy, and we expected that it would eventually fall out," McGowan told Buzzfeed. Fortunately, this "never happened".
Things started to come to light when a family member saw pictures of children with uncombable hair syndrome and questioned whether Taylor may have it too. However, according to the toddler's mum, it seemed too bizarre to even contemplate.
"We essentially laughed it off. We thought there is no way that our child could possibly have this ultra, ultra-rare condition that only affects 100 people worldwide," she said. "And we were completely wrong."
However, after reaching out to Regina Betz, a professor of dermatogenetics at the University of Bonn in Germany, Taylor's mum and dad got a shock.
After sending blood samples to Germany, they learned that their daughter did, in fact, have the PADI3 gene mutation responsible for causing uncombable hair syndrome. It is a recessive gene, meaning that if Taylor inherited only one copy from a parent, she would not have the syndrome. However, both Cara and Tom, her parents were carriers of one copy of it.
For unknown reasons, this condition usually improves over time and, by adolescence, the individual will have hair that lies flat and has normal or nearly normal texture. However, there are some situations in which the syndrome has remained with the individual forever. But Taylor's mum is adamant that, whether or not it resolves itself, her daughter will be fine.
"Maybe it will resolve and maybe it won’t," she said. "I have met both. Individuals who are now adults who appear to grown out of it — their hair has darkened and it no longer stands completely on end but perhaps it gives them a little bit of trouble — and on the other hand I’ve seen adults struggle very much with full, frizzy, hard-to-manage hair."
Reportedly, the 18-month-old often gets laughed at and compared to Albert Einstein - who may have had the condition himself - in the street. In addition, some people jokingly ask if she stuck her finger in a light socket.
However, her parents refuse to back down to ignorant comments and are determined to raise awareness of the condition."Our message that we would like to spread is one of accepting diversity, loving oneself, and recognizing bullying and what it looks like and making it stop," she said. "Being different is OK, being different is acceptable, and it should be celebrated."
With parents like hers, it seems, uncombable hair syndrome or not, little Taylor has got nothing to worry about. Keep on doing you, Taylor, you look fabulous.
