by Nathan Warner
For 9-year-old Jocelyn Sailor of Zimmerman, hair isn’t something she can take for granted. Jocelyn has a condition called alopecia universalis, which means she can lose all the hair on her body without warning. While other conditions of alopecia might only affect the hair on a person’s head, Jocelyn loses hair everywhere, including her eyebrows and eyelashes.
Jocelyn’s mother, Lisa, suffers from a tamer version of alopecia called alopecia areata, as does Jocelyn’s maternal grandmother, which led her to believe her daughter’s case is genetic despite the fact few doctors believe there is evidence for hereditary alopecia.
According to the National Alopecia Areata Foundation, 2 percent of the world’s population suffers from alopecia, including 5 million people here in the United States and 2 million children. Alopecia is not well understood, but it is a highly unpredictable and cyclical condition believed to be an autoimmune disorder, where the body attacks its hair as if it is an allergen or virus.
For Jocelyn, the condition first revealed itself 4 years ago when she began losing hair in patches on her head. She had grown it back by age 6, but began losing it again that year, only to triumph and gain it back the next year. Her hair had grown completely back and things seemed back to normal until November of last year.
“In the space of two months, she lost all her hair,” Lisa said, “and she was almost completely bald by Christmas.” She added that they couldn’t hide the condition any more from Jocelyn’s schoolmates or friends. “It was just so complete this time, that there really wasn’t any way to hide it, so I started telling friends and family,” she said.
Family friend Sara Scherer of Milaca prepared her daughter, Autumn, for seeing her best friend Jocelyn after the hair loss. “I told her that when she saw Jocelyn she wouldn’t have any hair because of a special condition she had,” Sara says, adding that Autumn was very distressed about Jocelyn’s alopecia and wanted to help in any way she could. Autumn and Jocelyn met when the families bumped into each other during a camping trip at the World Famous Camperville in Mora.
While Autumn wondered what she could do to help her friend, the Sailors learned about the Wigs for Kids program that has been providing hair replacement solutions for over 30 years. “I had a friend who got her hair cut at Fantasia Salon in Minneapolis,” Jocelyn recalls, “and she heard about the Wigs for Kids program through them and told my mom about it.”
The Sailors decided to contact the Wigs for Kids program and applied for a wig through them. “There was a lot of paperwork we needed to fill out and they asked Jocelyn a lot of questions,” Lisa recalls. “We waited three months to get our first wig after the paperwork was submitted, but when it arrived, it was perfect.”
Every year, Wigs for Kids donates one real-hair wig to a child suffering from hair loss. They receive three crates of hair donations in the mail daily from people all around the country and are able to help 125–150 children annually with hair replacement. Each wig requires 20–30 ponytails of hair grown to over a foot in length. These are not trivial costume wigs, as they can cost over $5,000. Jocelyn also has a synthetic wig that her parents bought from Fantasia Salon for $1,600. “The synthetic-hair wig is great for swimming and other really rough activities,” Lisa says, “but we have to be careful with the real-hair wig.”
Lisa says real-hair wigs only last six to nine months, while the synthetic ones outpace them to between nine and 12 months. “The wigs take a lot of work to keep up,” Lisa says, pointing to a container of shampoos, conditioners and hair nutrients that must be used for the 45-minute hair wash that they have to do at least once every few days for the synthetic wig and once a month for the real hair wig.
When Autumn saw Jocelyn’s wig, she made a bold decision, as her mother recalls. “On Super Bowl Sunday, Autumn came out of the shower and announced she was going to donate her hair for Jocelyn,” Sara said. In order to donate hair for a wig, Autumn needed to grow her hair out so she could have a 12-inch ponytail. “It was really hot,” Autumn frowned, “and a real pain for swimming.” Finally, when it could be measured to 13 inches, it was time for a haircut. Autumn invited Jocelyn to visit the salon with her for the deed. After they cut the ponytail off, Autumn said she felt strange. “But I’d do it again any day for Jocelyn,” she smiled. Jocelyn is looking forward to wearing the gift her friend donated to her once it is made into a wig.
Autumn and Jocelyn want to raise awareness about other children struggling with alopecia. For starters, they have been fundraising for Wigs for Kids and just raised $700, which they sent in the mail last week. “We want to help other kids facing what I’m facing,” Jocelyn says.
Jocelyn looks to the future bravely without fear that if her hair doesn’t grow back she’ll be without hair, thanks to her friend Autumn, her supporting friends, her family and Wigs for Kids.
For more information about alopecia, visit the National Alopecia Areata Foundation at www.naaf.org.
To learn more about Wigs for Kids and how you can sponsor a child, volunteer, or hold a fundraiser, visit www.wigsforkids.org.
To donate hair for Wigs for Kids, visit Fantasia Salon at www.fantasiatogether.com or call 763-544-9126 for more information.