Herald- STILLWATER, Minn. — Within five weeks last fall, 9-year-old Molly Steffl lost every hair on her body.
The long curly brown hair on her head? Gone. Arm hair and leg hair? Same. Even her eyebrows and eyelashes vanished.
“Once I was in the bath, and I pulled out a hairball that was this big,” said Molly, making the shape of a softball with her hands. “It was huge.”
Molly, who will be a fourth-grader at Lily Lake Elementary School in Stillwater, began losing her hair when she was 5. She was diagnosed with alopecia areata, an autoimmune disorder that results in hair loss. Her parents believe the condition may have been triggered by stress; Molly, who was born with a cleft lip and palate, was being teased at preschool.
“They called me names — probably the most hurtful one was ‘Snake Face,’ ” Molly said. “The mean kids called me ‘Snake Face.’ ”
Molly’s hair fell out in quarter-sized patches until last fall. In December, her alopecia areata had developed into alopecia universalis, total hair loss.
On her worst days after going bald, she’d refuse to go to school. “I had to carry her in,” said her mom, Abbey Steffl. “It cuts me just to think about it. She was crying and begging not to go.”
Abbey Steffl, a professional photographer, volunteered to speak to Molly’s class about her condition. “I wanted them to know that she wasn’t contagious, that she didn’t have cancer,” Abbey said. “We talked about what having alopecia means, and that she didn’t do anything wrong. Molly didn’t choose to have alopecia. I wanted them to know that they needed to support Molly.”
At the end of her talk, a student raised his hand and said to Molly: “You’re just like Kevin Bull.”
An encouraging example
Bull is a professional “obstacle athlete” and a fan favorite on NBC’s “American Ninja Warrior.” He also has alopecia.
Molly told her mom that she should apply to be a contestant on “American Ninja Warrior.”
“It kind of rolled from there,” said Abbey Steffl, 38, an elite CrossFit athlete. “She became my motivation. She was my ‘why.’ I wanted to raise her up. I wanted her to be courageous and strong, so I needed to be courageous and strong.”
Steffl, who grew up in Scandia and was an all-state skier at Forest Lake Area High School, checked the show’s website and learned that applications for the regional qualifying rounds had opened “just two days before,” she said. “They only accept them for a few weeks, and that’s the only time they’re open for the year.”
Steffl had 29 days to write, shoot and edit a three-minute video that would showcase her athletic prowess and tell her family’s story. She also wrote several essays to accompany the video.
“I had no clue what I was doing. None,” she said. “Sometimes you just leap first and figure it out later.”
While researching Bull, she learned about a weekend family camp in California run by the Children’s Alopecia Project; Bull is a mentor at the camp. The family, which includes Molly’s brother, Haven, 11, applied to attend the next one offered — in late April near Malibu.
“Its premise is ‘growing courage, not hair,’ ” Abbey Steffl said. “That struck a major chord with me because there were not any good treatment options for Molly at that time. Doctors tell you, ‘Hurry up and get a wig.’ You have no control over this.”
‘Dad, just shave my head’
The Steffls tried “everything under the sun” to get Molly’s hair to regrow: topical acid medication, steroid creams, daily high doses of Allegra.
“We changed her diet,” Abbey Steffl said. “We went to a chiropractor who was sure she could fix her. Finally, one day in January, my husband said, ‘We have to stop.’ ”
Chris and Abbey Steffl ordered a wig for their daughter, but it took several weeks to arrive. While she was waiting, Molly said she became more confident with her baldness — especially at school.
“Once I told my dad when I still had a little bit of hair, ‘Dad, just shave my head. I don’t even care at this point. This hair is bugging me.’ ”
Opportunities to leap at
In early April, “American Ninja Warrior” producers called Abbey Steffl to tell her she was invited to compete in a qualifying round in Tacoma, Wash., in mid-May. She had four weeks to prepare.
“I never had a desire to be on TV,” she said. “I wasn’t a ninja. It wasn’t my thing. But when this happened, I was in such a desperate place, I said, ‘Why not?’ My only decent excuse for not applying was because it was crazy. Well, crazy wasn’t a good enough reason not to do it anymore.”
When the Steffls arrived at family camp in California that weekend in April, one of the first people they met was Bull. “There are 17 different mentors, and they each drew three names out of a hat,” Abbey Steffl said. “Well, Kevin drew Molly’s name.
“Things just came together,” she said. “With this story, it gets to the point where you just feel like you’re the vehicle. There were just all these undeniable coincidences.”
In Tacoma, Abbey and Molly Steffl both were interviewed on camera, and the producers “fell in love” with Molly, Abbey Steffl said. While mom did not make it past the first cut, the show asked if Molly would “FaceTime in” during Bull’s run in the finals in Las Vegas in mid-June.
“Well, we did one better,” Abbey Steffl wrote in a Facebook post. “Molly and I made the trip out to Vegas, so she could be there in person. These are the opportunities I will take leaps for. First time to Vegas and worth it!”
Molly got to be on the sideline with Bull’s family, “cheering him on during the finals,” and was interviewed again, her mom said.
Telling Molly’s story
The Steffls recently learned Molly will be featured on “American Ninja Warrior” on Aug. 26; the show airs at 7 p.m. on NBC.
One of the show’s producers emailed the Steffls last week. “I don’t think I’ve ever been more impressed by a little girl than Molly,” he wrote. “She is so beautiful, so articulate, so full of life. She just puts a smile on my face. I’m sure America will love her when this airs.”
Molly hopes people will tune in to learn more about alopecia. She said she’s tired of people staring at her or thinking she’s a boy or asking if she has cancer.
A few weeks ago, in a grocery store in Detroit Lakes, Minn., a little girl questioned why Molly was carrying a unicorn hat.
“This girl was, like, ‘Hey, you know that’s a girl stuffed animal, right?’ ” Molly said. ” ‘And I’m, like, ‘Yeah, I’m a girl.’ She looked at me weird, and then she told me, ‘No, you’re a boy.’ She thought that I didn’t even know what gender I was.”
Said Abbey Steffl: “It catches you off guard. It cuts deep. It’s a constant battle. That’s why we strive to tell as many people as we can (about alopecia) because she’s never going to get away from that.”
One of Molly’s favorite T-shirts has this message on it: “Staring causes baldness.”
“I would like if parents would teach their kids a big life lesson in not assuming things and pointing them out because that can hurt someone like crazy,” Molly said. “That hurt me because they’re just assuming I’m a boy, and I’m a girl. They give you the crazy eyes like you’re crazy.”
Choosing the challenge
Molly has more important things to do than deal with crazy eyes. She’s planning five careers: Naturalist at Yellowstone National Park. Photographer. Artist. Teacher. Architect.
She’s also helping her mom train for her next Ninja Warrior audition at the Conquer Ninja Warrior gym in Woodbury; Abbey Steffl plans to apply to be a contestant again next year.
“You can’t choose what happens in life …” Steffl said.
“But you can always choose how you react,” said Molly, finishing her mother’s sentence for her. “Oh, yes. I’ve heard that many times.”
“That’s our theme,” Steffl said. “Molly has been dealt difficult things, but you choose how you deal with those things. When this started, I didn’t really have a plan. I was a desperate mom, and I was just trying to help my daughter. I wanted to be a role model and show her what courage looks like — what it looks like to take a leap. Now, this is beyond us. We are a vehicle for a message, and it’s very humbling and mind-blowing. I feel like it’s bigger than we are.”