Crystal Girl Raises Awareness on Rare Disease That Causes Hair Loss
The Johnson family back yard in Crystal is an oasis for 6-year-old identical twins Ava and Keira.
The girls pointed to a tree in their fairy garden and explained how it got there: “We made it ourselves. We just put a branch down there, and hang stuff up. We used rocks to make it stay.”
There are chickens. All of them have names. All of them lay eggs in a coop that’s designed to resemble First Avenue, complete with stars painted on the side featuring all of the hens’ names. There’s an even a little door labeled “Hentry.”
The back yard was the creation, in part, of the girls’ mom, Leslie.
“It’s really been just a place they can be themselves,” said Leslie Johnson. “Zero judgment.”
Alopecia Universalis Diagnosis
Four years ago, doctors diagnosed Keira with alopecia universalis.
“Her body just thinks, for some reason, her hair follicles are the bad guys,” explained Leslie Johnson. “Her immune system attacks her hair follicles and that causes her hair to fall out.”
More exhausting than explaining it to other people may be her constant explanation to her little girl why people who constantly come up to the family out in public. Johnson says people either don’t know what to say or misunderstand why the girl may not have any hair on her body.
“A lot of people assume bald-cancer-illness-germs-contagious,” said Johnson. “We really just want to help educate people, because this really is this generation of kids’ reality. It’s all coming from a very kind place, but I live in a metro area and I don’t want her growing up to think it’s normal for an old woman to give her $10 in a public bathroom at a restaurant.”
Johnson says that actually happened during a family trip to Wisconsin. They were on the way back from a week of alopecia summer camp where the girls met friends from all across the Midwest and played, learned and just accepted each other.
Walk for Alopecia is Sept. 30 in Crystal
The Johnsons want to create that kind of community vibe here in the Twin Cities. They’re organizing the area’s first-ever Walk for Alopecia on Saturday, Sept. 30 from 10 a.m. to 1 p.m. at Becker Park in Crystal. There will be chances for families to meet and walk together for as long a distance as possible or desired. Organizers are planning to host a food truck and offer activities.
One goal of the event is to allow for more positive and productive conversations about not just alopecia, but whatever it may mean if someone looks or has a different reality than their neighbor, classmate, or friend.
“It’s much easier to talk about it, and you don’t have to necessarily come up to us and say ‘Hey, my kid was wondering: why is your kid bald?'” said Johnson. “I’d love to have that conversation with people, I’d love to help educate people, because maybe other people with visible differences will start to feel more comfortable as well.”
Haircut Benefit on Sept. 23
One week ahead of the Walk for Alopecia, stylists at Salon Alles in Roseville will host a fundraiser for Keira’s team by offering $50 haircuts on Saturday, Sept. 23. All proceeds will go to the event. Johnson said anyone who wants to donate 12 inches or more of hair can get it cut for free. The hair can go to wigs like ones her daughters like to wear.
Johnson said the twin bond between her daughters goes deeper than even she experienced with her own identical twin sister. Ava wanted to shave her head in solidarity with Keira, or sometimes will don wigs alongside her sister when the mood strikes her.
“If Keira is feeling self-conscious, or if people have questions and she doesn’t always know how to answer them, Ava will speak up for her a lot,” said Johnson.