Eight-year-old Kayla Massey loves gymnastics and cheerleading.
She particularly likes to swing on the bars in gymnastics and enjoys the chance to flip and tumble in cheerleading. In her free time, she makes rubber band bracelets, and she rarely loses to her father in card games like War. In second grade at Toledo Christian, her favorite subjects are science and Latin.
At 4 years old, Massey was diagnosed with alopecia, an autoimmune disease that attacks the body's hair follicles and causes hair loss. As is sometimes the case with alopecia, Massey has lost her hair twice.
“One day I woke up, and I went out of my bed, and I noticed some of my hair was falling out,” Massey said. “I think it's fun when my hair comes back, but it's sad when I lose it.”
Massey’s mom, Jonelle Massey, is active in bringing awareness to alopecia, and Massey’s dad, Jeff Massey, is men’s basketball associate head coach at the University of Toledo. Inspired by Kayla and other families affected by alopecia, Jan. 24 and 25 will be Rocket for Alopecia Weekend at Toledo.
On Friday, Jan. 24 at Brandywine Country Club, there will an auction to raise money for the National Alopecia Areata Foundation. Then the Toledo basketball game against rival Bowling Green on Saturday, Jan. 25 will be the Alopecia Awareness Game.
“A lot more people are affected than we know,” Jonelle Massey said. “It’s kind of a hidden thing. People wear a lot of wigs and stuff like that. A lot of people are going through it and there is support out there for them. When you see someone with no hair, they might not have cancer.”
There are several different classifications of alopecia, and in Kayla Massey’s case, she has alopecia universalis, which means she has lost all hair on her body, including her eyebrows and eyelashes.
Kayla Massey is confident enough to let her head show, but she often wears hats. She tried a wig, but that was too itchy and wasn't a big hit.
With alopecia, the future is a bit unknown, because hair can grow back years later and stay permanently, or it can never grow again, or it can grow back and fall out once again.
“It's a mix of emotions,” Jonelle Massey said. “On one hand you are relieved that it is non life threatening and doesn't impair her physical daily life activities. But at the same time her appearance is altered. With alopecia, the hair grows back for some and it has for her twice. It's an emotional rollercoaster, like will it stay? There are cases where it does 15, 20, 30 years or just three years later. It's so unpredictable.”
For a young child like Kayla Massey, the unpredictability and the unknown can be tough.
“Every once in a while you will hear her say, 'I wish my hair would grow back' or 'Will my hair ever grow back?' and that's really hard to hear,” Jeff Massey said. “It touches you a little bit. There isn't anything you can do. That's one thing as a parent that if anything ever happens to your kid, you wish you were going through it to protect your kid. It's a situation where I can't protect her. ... I can't change it, and it's hard to get used to not being able to protect her in the way that I would like to.”
Jeff and Jonelle both said they have been impressed and inspired by the strength and resiliency that Kayla has shown. And Kayla says her self-confidence continues to grow.
“Kids who don't know always ask 'What is wrong with you?' or 'Why don't you have any hair?',” Jeff Massey said. “What I realized about her is that she is really strong. Maybe stronger than all of us. She deals with it every day and it's constant. You think about her being in situations where she is around people she doesn't know and has to deal with those questions all over again. I know it's impacted her. ... That's tough for an eight-year-old. It makes you think about what you take for granted every day.”
First Published January 9, 2020, 8:17 p.m.
