Tiny dancer

By Sara Gilbert Frederick
The Free Press

July 06, 2008 01:00 am

— Lilly Stiernagle loves to do twirls. She can hit all five ballet positions. She skips, sashays and walks on her toes. And she’s exceptionally good at doing the splits.
But that’s where Lilly has an advantage over the other 5- and 6-year-olds in her dance class.
Lilly has no hip sockets. She has no femurs, no knees, no fibula. With only cartilage at the top of her tiny legs, Lilly has no trouble slipping down into the splits.
“She’s very flexible,” her mother, Jenny Stiernagle, says. “It doesn’t bother her at all.”
Lilly was born with an extremely rare condition known as Proximal Femoral Focal Deficiency, or PFFD. There are different degrees of the congenital anomaly, from short or undeveloped femurs to a lack of bones entirely; Lilly has the most severe form.
That doesn’t stop the 6-year-old Easton girl from dancing, though. It doesn’t stop her from doing anything, actually. Although she uses a wheelchair to navigate hallways and long distances, she can walk, climb and do basically everything on her own. So when she chose dance lessons over gymnastics last fall, her mom wasn’t at all worried about how she would fare.
“I figured it would be like anything else that she’s had to figure out,” Stiernagle says. “When she needed to get up to the sink, she just pulled out the drawers like steps and climbed up. So I knew she wouldn’t have issues with dance.”
Brittany Bisel, a partner in the Wells-based Spotlight Dance studio who has been Lilly’s teacher for the past year, wasn’t so sure. She was preparing to work with a child in a wheelchair when Lilly rolled into the gym.
“I was worried,” admits Bisel. “But then, on that first day of class, she just popped right out of her wheelchair and walked over. She works so hard and smiles through the entire class. She is just wonderful.”
In fact, Bisel hasn’t changed anything about the way she teaches to accommodate Lilly. The 12 kids in the class all do their foot exercises together. They all hop on one foot and walk on their toes. They all leap over their shoes.
If the leaping gets to be too much for Lilly (the exercise takes the children throughout the gym, and they often move quite quickly), she helps Bisel with the music instead.
Bisel has been dancing since she was 3 years old. She studied dance at Minnesota State University and at a studio in Minneapolis. She’s been teaching full time for the past four years and became a partner at Spotlight Dance two years ago. She’s never encountered a dancer like Lilly before. But she is impressed by Lilly’s eagerness to dance and her ability to keep up with the class — and the effect she has on the other children.
“Everyone wants to be next to Lilly,” she says. “They want to stand by Lilly, sit by Lilly, be partners with Lilly. Everyone loves Lilly.”
It’s easy to love Lilly, with her infectious smile and bright eyes. But sometimes the attention is overwhelming for her, and for her three younger siblings. The Stiernagles try to be open about their daughter’s condition and to downplay the glances she gets in public places.
“Our 4-year-old Lydia helps push Lilly in Target sometimes, and she notices people staring at her,” Stiernagle says. “I just tell her that people aren’t used to seeing kids in wheelchairs. And if we’re at a park or someplace with other kids, I’ll just explain it right away, so that there aren’t the stares and the whispers.
“As parents, we have to be positive so that everyone else can be positive too,” she adds. “But it’s difficult sometimes. Everybody looks at her, everybody asks questions.”
The Stiernagles were seven months pregnant with their first daughter when they found out that she would be born without all of the bones in her legs. Holding her, Stiernagle says, was much different than holding a child with legs.
“There was nothing hanging off the side,” she says. “It was strange when our other kids came along.”
They have met only two other people with the same condition — a child in Texas, and a man in his 80s who told them that he had never known anyone else with it.
As far as Lilly is concerned, she’s just another dancer. She’ll perform in the summer dance program in August and then keep taking classes as long as she can. Besides horses, dance is her favorite thing.
“I asked her what she wanted to be when she grows up,” her mother says. “She said, “A ballerina who rides a horse.’”

Spotlight Dance experiences success
Lilly Stiernagle is one of more than 200 dancers between the ages of 3 and 18 taking classes from Spotlight Dance, which has its main studio in Wells but also works with students in Minnesota Lake, Good Thunder and Mapleton.
Some of those students, partner and teacher Brittany Bisel reports, have experienced remarkable success.
In June, Bisel took eight Spotlight Dance teams to the Midwest Stars National Competition in Wisconsin Dells. Five teams won platinum awards (the highest level available) and three took golds — a great showing for the small studio.
But one Spotlight team did even better.
Team Ramalama, which received a platinum award, was also honored with the specialty showmanship award and received the highest point total of any large group of seniors (ages 16-18) at the event — a wonderful surprise for Bisel and her dancers.
“We were the smallest studio there,” she says. “We were up against these huge studios from big cities, so it was pretty exciting for us, and for our little town.”
Next up is the Showstopper National Finals in Disneyland on July 17. Although Bisel, who choreographed the winning routine and who was honored by the judges, is understandably excited, she admits that her dreams have already come true.
“To have something like this happen is what every dancer dreams of,” she says. “And it doesn’t happen all that often. So it was just wonderful.”
— Sara Gilbert Frederick

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