When her daughter lost most of her hair over Thanksgiving weekend, Courtney Edwards sent out a distress signal to the world.
For more than a year, Edwards had been watching her daughter, Carleigh — now 8 years old — lose her thick, shiny hair in patches due to alopecia areata, a condition in which the body’s immune system attacks a person’s hair follicles. The condition caused Carleigh’s curls to shed in clumps, revealing coin-sized bare spots on her scalp. Then, on the Saturday after Thanksgiving, the pace of her hair loss increased suddenly and dramatically.
Carleigh returned to her third grade classroom after the holiday break with her eyes downcast and head covered by a turban to hide her large new bald spots. Her parents and her school principal stood by her side as she spoke to her class and explained why she had 80% less hair than she’d had the previous week.
Right after the class discussion, Carleigh’s mom recorded an emotional video in her car.
“I’m going to try to do this without crying,” Edwards says in the video. “She was so brave and said to her class, ‘I have alopecia areata. It’s when my body is allergic to my hair. So please don’t be mean to me. And don’t make fun of me.’ Then she broke down and started weeping in my arms.”
Little did Edwards know that sharing her heartfelt message online would trigger a tidal wave of support and an upwelling of confidence for her daughter.
A disturbing diagnosis leads to tough treatments
Carleigh began to show her first signs of alopecia in October 2021.
“I remember the exact day,” Edwards tells TODAY.com. “She was eating breakfast and said, ‘Mommy, what is this?’ And she put her finger underneath her hair. It was a spot maybe a little bit bigger than a dime.”
Edwards says she began looking for a dermatologist immediately, but her search for answers was unsuccessful at first. One doctor suggested Carleigh had traction alopecia, a condition caused by repeated hair tugging and pulling. Another tried to be helpful but didn’t have much experience with the disorder in children. So, Edwards collected as much information as she could about possible treatments for autoimmune diseases like alopecia areata.
She read about Janus kinase (JAK) inhibitors as a hair loss treatment option. After multiple visits to different dermatologists, Carleigh began taking both steroid injections and prednisone. She was also prescribed Tofacitinib, a topical compound medication that cost the family $110 out of pocket for a three-week supply.
Despite all the treatments, Carleigh lost most of the hair on the lower back half of her scalp within two months of finding her first bald spot. She began asking her mom to help her hide what was happening.
“She was seven, so she was very conscious of everything and everyone knowing what was going on with her,” Edwards recalls. “She didn’t really have the confidence that she has now. She just wanted she wanted me to cover her spots.”
Carleigh struggled so much that she started taking showers in the dark, switching off the lights before she walked into the bathroom, and turning her back to the mirror so she wouldn’t have to see herself, her mom recalls. On especially dark days, Carleigh would find piles of her own hair on the floor. Picking up the strands, Carleigh would hand them over to her mother with tears and apologies. She knew how hard her parents were working to help her keep her hair on her head, and she began to feel a sense of guilt and responsibility that it wasn’t working, her mom explains.
Like many Black women, Edwards brought her daughters to get their hair washed and styled by a professional. But when Carleigh began to lose her hair, Edwards took on the task of carefully parting her daughter’s tightly coiled hair so that she could comb through it, apply medication and style it herself.
“It took us forever to pull apart her hair delicately because of the shedding,” Edwards explains. “I didn’t want to just rake everything out at the same time. Sometimes it took me three or four hours just to do her hair.”
When Carleigh’s eighth birthday came around in October 2022, Edwards bought Carleigh a Black Barbie doll with curly hair. She says she “took scissors to it” to create spots around the doll’s head.
“I wanted to give it to her and say, ‘Look, she has spots just like you,’” Edwards says.
Two times a day, every day, Edwards sat down with Carleigh to apply her medication. They’d also visit a dermatologist every four weeks for steroid injections.
“That was hard,” Edwards recalls, blinking back tears. “As a seven-year-old, having needles stuck into your head. She was brave. She just amazes me.”
‘Mommy, I’m ready to cut my hair’
For some time, the treatments seemed to ward off Carleigh’s alopecia symptoms. Then Thanksgiving weekend arrived.
“I saw her scratching her hair and I said, ‘Carleigh, I’m going to wash your hair,’” Edwards recalls of a conversation they had on Thanksgiving Day. Two days later, as Edwards washed Carleigh’s hair, “it all came out,” the mom says. “She started crying. ‘Mommy, why? What did I do wrong? I’ll do the shots again. People are gonna make fun of me.’”
Early the next week, Edwards shared her video asking for help. Words of solidarity from friends, acquaintances and total strangers came pouring in.
Eventually, Edwards’ sister introduced her to a friend from college whose young daughter also has alopecia. Edwards says that Carleigh and her new friend spoke on the phone about their experience for hours. A few days later, Carleigh came to Edwards confident in a decision she’d made.
She was ready to let go of the rest of her hair that remained.
“She was the one that said, ‘Mommy, I’m ready to cut my hair,’ and I was like, ‘OK, fine. Let’s just think about it,’” Edwards says. After a couple of days, Carleigh came back to her mother again. “She was like, ‘Mommy, if you don’t cut it. I’m gonna cut it.’”
On Dec. 4, Edwards handed over a pair of scissors and sat down with Carleigh in the family’s kitchen. Edwards filmed while her husband, Kelan Sr., and their three other children, Kelan Jr., 9, Chloe, 5, and Kohl, 3, gathered around Carleigh.
Edwards says that some part of her knew that her daughter would need to look back at her strength at that moment, so she decided to capture it on her phone.
In the video, Carleigh sits with a cape around her shoulders and addresses the camera.
“My name is Carleigh. I have alopecia. I am ready to cut my hair,” she says, adding, “Because I am still beautiful.”
Carleigh’s hesitant tears emerge here and there, but for the most part, she is all smiles and even seems impressed by herself as she cuts and lets go of her braids. Her older brother and sister periodically appear before the camera to assure her that she’s beautiful.
In the end, both her dad Kelan Sr. and her big brother Kelan Jr. join in and have their heads shaved as well.
“It’s very uncommon to see a little girl who has no hair at all. I didn’t want her to go through that alone,” Carleigh’s dad explains, adding that during quarantine, he decided to grow out his hair and put in the arduous effort of maintaining locs.
“She knew how important my hair was to me,” he tells TODAY.com. “And I knew how important her hair was to her. I wanted to show her that she has support from her father, she has support from our family throughout life.”
Now, Carleigh also has plenty of support outside her home. At school, her classmates have been receptive and respectful, and her teacher started wearing a turban to show solidarity.
The videos about Carleigh’s situation have been resonating with people on TikTok and Instagram. The footage of Carleigh’s haircut has nearly 900,000 views on TikTok, with hundreds of comments about how beautiful the 8-year-old is. The video has also sparked conversations on the relationship that Black women have with their hair, along with the subliminal messages that bombard girls daily and reinforce the idea that straight, long hair is the standard of beauty.
Post-haircut, however, Carleigh has found new words to describe her feelings and perceptions. Here’s how she defines beauty now:
“It means bravery and love and kindness.”