Zoey Freda, a five-year-old girl from Topey, Alabama, bravely faces the challenges of Uncombable Hair Syndrome (UHS), an extremely rare genetic condition. UHS is characterized by frizzy, unruly locks that grow in multiple directions from the scalp, being fragile, slow-growing, and difficult to style. In an effort to raise awareness about UHS and its potential accompanying symptoms, including heart troubles, Zoey's mother, Tiffany Lequier, aged 35, has launched a Facebook page called "The Chronicles of Zoey."
Remarkably, Zoey was born without a single strand of hair on her head, according to Tiffany. Eventually, a peach fuzz started to grow, but it fell out when she turned one. When it grew back, it appeared crimped, resembling the wild fur of certain dog breeds," Tiffany chuckled. "It looked as if I had taken a crimper from the 80s and crimped every individual hair on her head. I was puzzled because no one in my family had hair like hers; ours is either brown or black." Zoey's hair took a long time to grow, and it couldn't be styled, making it impossible to tie girly bows without them slipping off. She has encountered cruel comments about her appearance. Tiffany shared, "People have said to me, 'Look at that bedhead, don't you take care of your daughter?' It made me think about how, as adults, we tend to judge a book by its cover a lot. So, the more awareness we can bring to the fact that there is nothing wrong with Zoey, the better. She is smart, quirky, perfectly healthy, and she embraces that. She just looks different."
It wasn't until Zoey turned two that Tiffany, after reading about another child with UHS, realized that her daughter had the same condition. Through a support group on Facebook dedicated to the condition, she connected with other parents and discovered that there could be additional symptoms linked to the syndrome, including issues with nails, teeth, and most seriously, the heart. Tiffany expressed, "Although it's thought to be extremely rare, the heart condition freaked me out so much that I took her to see a dermatologist when she was two and a half, who confirmed she had UHS. Then we consulted a geneticist for tests to rule out any of the other comorbidities. That whole period was such a whirlwind." Fortunately, the tests revealed that Zoey had no symptoms of the associated comorbidities.
Styling Zoey's hair is a challenging task and can have unpleasant consequences. At the age of three, the playful toddler had another incident, this time involving a pot of toy slime, which became tangled in her hair.
Zoey accidentally got some gunk stuck in her hair, which could have pulled out more of her fragile locks. Thankfully, her mom managed to clean it out using washing up liquid. Slime is now banned from the house. Unless her hair gets really dirty from playing outside, Tiffany only washes Zoey's hair every two to three weeks. Due to her minimal sweating, which Tiffany claims is common among UHS children, Zoey's hair remains soft and smooth.
After trying various masks and treatments, including those designed for Afro hair, the only things Zoey's locks can handle are occasional sprays of detangler and a specially-designed brush. Tiffany shared, "There are multiple times a week when she will be walking around with a clump of hair in her hand." When it first started happening, Tiffany thought her child would be bald for the rest of her life, but Zoey's hair is extremely thick. She said, "However much falls out of that child's head, there's a lot more where it came from." Sadly, as Zoey gets older, she longs to try out different hairstyles, but she can only wear hats, fabric hair ties, and headbands, as elaborate braids and plaits are not an option for her.
After attempting and failing to straighten her daughter's hair, Tiffany now embraces Zoey's naturally voluminous look. In fact, Zoey has only had her hair cut three times in her life. Tiffany believes that her daughter's hair will become more manageable as she gets older and may even become "normal" when she reaches puberty, according to scientific research into the condition. Tiffany said, "We're very positive about her hair in our house, and we've instilled that in Zoey from a young age. We talk about how it's crazy, and that's okay, and that the good Lord just spent a bit more time on it to make it that way."
