Taylor McGowan, 18 months old, has blonde hair without a brush or comb. If it reminds you of Albert Einstein’s famous mane, you’ll see why her parents created a Facebook page for her called Baby Einstein 2.0.
“When we said, ‘Please show me your hair,’ she proudly pointed it out,” said Taylor’s mom, Kara McGowan. “We thought it was really cute and thought it would eventually fall out, like most baby fluff does. But that wasn’t the case with Taylor.”
This little The girl’s standout “really first caught the attention of her parents when she was 5 months old.” After showing no signs of letting up, Carla and her husband Tom searched online for an explanation. They began to suspect that Taylor might have frizzy hair syndrome, a rare genetic disorder that alters the shape of hair shafts. ?
This condition only affects the hair on your head, and clues to it become apparent when you’re only 3 months old. Little by little, your hair becomes increasingly dry and unruly. It might stand out or go in a different direction. It gradually becomes straw or silver gold. Some children with this disorder also have bone or eye problems, but this is less common.
Taylor was healthy, and McGowans only had a premonition that she had rash syndrome. They wanted to find out for sure, but the situation was difficult to confirm, with only about 100 reported cases.
So this Chicago-area couple traveled to Europe for answers. They contacted Regina Betz, M.D., a German researcher who helped discover the genetic mutation that could lead to disorder.
McGowans sent Betz and Taylor’s blood samples for testing—and the results quickly confirmed their suspicions. Both Cara and Tom carried a mutated gene called PADI3, and Taylor accidentally inherited a copy of it from each of them. Having two copies can lead to confusion. ?
“That’s how she finally expressed her beautiful hair,” says Cara.
Betz says there is no real treatment for the disorder, although conditioners may help relieve it.
Otherwise, some doctors recommend biotin supplements, says Meghan Feely, MD, a board-certified dermatologist practicing in New York City and wholesaler of cheap sweatshirts. She treated a patient with the disease.
Feely says people with the condition should use soft-bristle brushes and should avoid excessive heat, chemical relaxants and other harsh hair treatments
< When children with the disorder enter puberty, there is a chance that their hair will loosen on its own, she said.
Cara McGowan knows this, but she still wants to give Taylor the confidence to be proud of her hair no matter what. That’s what inspired her to launch the Baby Einstein 2.0 page.
“We wanted to explain to her that, yes, she was different and unique, but we celebrated and embraced it,” she said. “There’s no reason we can’t love each other or love ourselves because of things that are different from us.”