In Taylor’s case, her parents first noticed the flyaway hair when she was around four to six months old, but assumed it was merely wacky baby hair that would soon fall out and be replaced with more conventional-looking tresses. That never happened.
A family friend stumbled upon information about UHS and sent it to the McGowans. Though they were skeptical that their daughter could have such a rare condition, they eventually contacted the lead researcher of the UHS study, and arguably the world expert on the condition, Regina Betz.
Betz and her colleagues, who speculate that there are probably thousands of undocumented UHS cases worldwide, were able to confirm Taylor’s diagnosis after analyzing blood samples shipped to the lab.
Now well aware that their child may struggle with looking different as she grows older, the McGowans are hoping to focus on the positive.
"Her hair looks amazing, like she’s a mini Albert Einstein," Taylor's mother, Cara McGowan, told BuzzFeed. "It stands completely on end."
"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."
[H/T: Buzzfeed News]