The Free Press, Mankato, MN


July 6, 2008

Tiny dancer

Born with a rare condition in her legs, girl embraces dance as her favorite hobby

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.”

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