An Illinois toddler has been diagnosed with a rare condition that makes her gravity-defying hair literally impossible to tame.
At 17 months, Taylor McGowan is one of a handful of children around the world with a known case of Uncombable Hair Syndrome (UHS).
It causes the tot’s bright white hair to stand on end.
“At first we thought we would just put a bit of water and comb it down, but it pops back up,” said the girl’s mother, Cara McGowan.
She said she has tried all kinds of styling products, but nothing can control Taylor’s messy mane.
“In total, we have tried all kinds of products, maybe 15 different things. We have tried hairspray, gel, mousse. In the end, we just gave up and dressed her up as Albert Einstein for Halloween,” said McGowan.
The couple contacted professor Regina Betz at the University of Bonn in Germany, who conducts research into UHS.
According to Betz’s team at the Institute for Human Genetics, the syndrome is caused by a mutation to one of three gene—PADI3, TGM3, and TCHH.
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.
Taylor attracts crowds wherever she goes.
“We are really not able to go anywhere without comments or questions from strangers, some of which are not always kind. Many people will ask if our daughter has stuck her fingers in a light socket or if we have done something with her hair,” said McGowan.
While most people are friendly, McGowan said she has been accused of bleaching her daughter’s hair.
“Most people compliment her, but others wonder if it is bleached or damaged and some people online have asked if she is mixed race or has African-American genetics,” said McGowan.
She said some comments are downright mean.
“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. It was upsetting. It’s a form of bullying. We do hope we can spread a message of awareness for people who are different,” Taylor’s mom said.
But the family loves her unique look and have nicknamed her “Einstein 2.0” after the scientist, whose shock of static white hair is also rumored to have been caused by UHS.
“I absolutely love Taylor’s hair. I personally think it is gorgeous and it matches her personality because she is outgoing and free,” McGowan said.
Taylor was born with no hair but began sprouting tufts of soft baby fuzz when she was around 5 months old.
Rather than falling out and growing back straight and brown, like her parents’ hair, Taylor’s bright blond locks grew and grew.
Full-time mom McGowan, a former mental health worker, said, “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.'”
“We laughed and brushed it off and thought, ‘There’s no way our child would have this ultra rare condition,'” she said. “But we waited for her hair to lay flat and it didn’t.”
Genetic testing revealed that both parents carry a mutation of the PADI3 gene, which Taylor inherited.
Since the diagnosis, the couple has started sharing their daughter’s journey on her Facebook page, Einstein 2.0 – UHS Awareness.
“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,” Taylor’s mom said.