Toddler Nicknamed 'Baby Einstein 2.0' After Being Born with 'Ultra-Rare' Hair Condition
When parents Cara and Tom McGowan first welcomed their baby daughter Taylor into the world, they knew she was special.
Like many other babies, the little girl was born without hair, and for the next five months, she appeared to be developing normally.
But soon, Cara and Tom noticed bright blond tufts of hair sprouting up on her head. And over time, the tufts only continued to grow.
Instead of falling out and regrowing straight brown hair like her parents, Taylor’s hair stayed blond and straight — straight up, that is.
“At first we thought we would just put a bit of water and comb it down, but it pops back up,” Cara explained.
“I didn’t want to put a bunch of chemicals on her hair and I had read that aloe vera gel would act like hair gel. We tried that several times to no avail. In total we have tried all kinds of products, maybe 15 different things. We have tried hairspray, gel, mousse.”
At first, the parents laughed off the idea of their daughter’s hair being anything but ordinary. But the longer they waited for her hair to finally lay flat, the more it seemed to defy the laws of gravity.
Wondering why Taylor’s hair was so wild, Cara and Tom were talking with Tom’s mother one night when she told them she’d seen a photo of a child with similar hair online.
“At one point we had a chat with my mother-in-law who said, ‘There is a photo on the internet that looks like Taylor,’” Cara explained. “We laughed and brushed it off and thought, ‘There’s no way our child would have this ultra-rare condition.’”
Although they had their doubts, the ultra-rare condition, known as Untamable Hair Syndrome, seemed plausible. The parents soon contacted Professor Regina Betz at the University of Bonn in Germany, who is a specialist on the subject.
After a series of tests on Cara, Tom and Taylor, Betz confirmed what they’d suspected: Taylor had UHS.
The genetic testing revealed that both parents carry a mutation of the PADI3 gene, which causes the syndrome, and passed it down to Taylor.
According to Fox News, “The defect impairs the interaction of the structural protein that gives hair its shape and strength. This gives hair follicles a triangular, heart or kidney-shaped cross section, resulting in uniquely frizzy hair.”
It is so rare that by 2017, less than 100 cases had ever been reported worldwide.
But rather than see Taylor’s unique hair as something wrong with her, Cara and Tom fully embraced their daughter as she was.
The couple began calling her “Baby Einstein 2.0” and even went as far as dressing her up as Einstein for Halloween.
“[My husband and I] had never heard of it before or dreamed that there could even be such a thing,” Cara said. “We want her to know she is beautiful and perfect and that everybody is unique. We want her to embrace it and love herself just the way she is.”
Of course, the attention isn’t always easy to deal with, as people point and even laugh at the little girl with the “crazy” hair.
“Sometimes it’s difficult,” Cara said. “We want to engage with the public but we also want to live a normal life and be able to shop without being stopped nine or ten times,” she said.
“One day we were at our local pediatrician’s office and a woman with her daughter started pointing and laughing and saying, ‘Look, how funny her hair looks,’” Cara recalled. “It was upsetting. It’s a form of bullying. We do hope we can spread a message of awareness for people who are different.”
Thankfully, this family has said goodbye to the bullies and those who single out their daughter for no reason.
“She doesn’t really enjoy bows or having her hair braided so we have chosen to allow it to be wild and free,” Cara said.
“I absolutely love Taylor’s hair. I personally think it is gorgeous and it matches her personality because she is outgoing and free.”
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