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Jacob Wiegand, Deseret News
Jordan High School freshman Taylor Tilby said she never really felt left out or different around her teammates. “They have included me a lot and made me feel so loved,” Tilby said. “They’ll always be there for me.” Tilby has thrombocytopenia-absent radius (TAR) syndrome and uses a prosthetic leg, but she doesn’t let that stop her from pursuing her love of dance. “I think that everyone sees Taylor as an inspiration,” assistant coach Stephanie Darrow said. “Like (Tilby) said, our team has never seen her disability. Taylor earned that spot on the floor just as everybody else does.” Pictured above: Tilby, right, warms up with other Jordan Charlonians before the drill team takes the floor during the state semifinals at Utah Valley University in Orem on Thursday, Feb. 1, 2018.
When I’m performing I feel like I’ve accomplished something. I like to go out and dance. I like to show people what I can do, and that nothing can hold you back. —Jordan freshman Taylor Tilby

SANDY – Taylor Tilby lives a conspicuous life.

It’s not her choice to stand out. It was a genetic twist of fate that prevents her from ever just blending in with the crowd.

So when a friend suggested the freshman try out for Jordan High’s drill team, she was more than a little hesitant. High school is hard enough without giving strangers another reason to stare.

“I was scared because the team kind of scared me,” she said. “I don’t like to compare myself to others, to what they can do. I was nervous because I didn’t know what the other girls would think of me being on the team.”

Her mother was even more anxious.

“My first thought was, ‘No way,’” said Shannon Tilby. “Everyday she deals with people looking at her. She doesn’t like being in the spotlight, and this is going to be hard. … But after talking with her and the coaches, I just felt like why not.”

Jordan High School freshman Taylor Tilby, center, waits backstage with other Jordan Charlonians before one of the drill team's performances at the state semifinals at Utah Valley University in Orem on Thursday, Feb. 1, 2018. | Jacob Wiegand, Deseret News

In fact, it was an email from coach Lacey Wing that turned the conversation from a terrifying, unrealistic fantasy to a real possibility.

“I thought, ‘Maybe she is the girl other people need to see,’” Shannon Tilby said. “It doesn’t matter how you look. You just do what you love.”

And that’s all Taylor Tilby wants to do.

The 14-year-old was born with TAR syndrome, a rare genetic condition in which patients are born without the radius bone on the forearm. Taylor also has a prosthetic leg because her knee was fused. Despite having very short arms and a prosthetic leg, Taylor has “never shied away from anything,” said her father, David. “She played soccer, but didn’t like the contact. She’s a fantastic singer, and we thought that’s the route she would go. But she loved dancing.”

Shannon Tilby put her daughter in dance classes at age 5.

“It was really like physical therapy is how it started,” Shannon said. “She couldn’t quite keep up with the girls her age, so it got a little hard for her. She didn’t want to do it.”

They took some private lessons, and she developed a bond with the teacher, who helped Taylor see more possibilities in dance.

“We were just trying to keep her active,” Shannon said. “When she got into the private lessons, the teacher asked her if she’d be willing to compete? She said ‘yeah, I’ll try it.’ She was lucky to have an amazing teacher who just really inspired her that she could do it her way, and it would be OK.”

She didn’t just participate in the competitions, she won.

“She came home with some huge trophies,” Shannon said laughing. Then she and a friend did some dances together, and it was that friend, Kenzie Tait, also a freshman at Jordan, who said they should both try out for the team.” Buoyed by the support of the coaches and Tait’s friendship, Taylor tried out, made it and helped Jordan reach the finals of the 5A state drill team competition last week.

She said participating in drill team hasn’t just given her something to do, it’s transformed her high school experience.

“It was hard, really hard,” Taylor said. “I’ve loved it. I just love feeling included. I don’t feel different when I’m around (the girls), I guess. They don’t treat me different. I feel like I can do what I want with them without feeling judged or without feeling like I don’t belong.”

She admits that sometimes she gets tired of the stares and the comments — even those meant to be positive. It is a difficult thing to be someone’s inspiration simply because you were born with a genetic disorder. She describes it as “hard and cool.”

Taylor said she’s had reservations, even after making the team. Luckily, she has very supportive coaches and teammates, and her passion for dance outweighs any fear.

“I have had hesitations about being in certain dances,” she said, admitting she worried that she might hurt the team’s ability to compete. “I talked to the coaches, and they said they’d talked to judges, that I wouldn’t hurt them. That made the hesitation go away. They wanted me.”

Like any dancer, any athlete, Taylor Tilby finds joy and purpose in doing something others might not see as a possibility for her.

“When I’m performing I feel like I’ve accomplished something,” she said, noting their dance number was to the song “Bird set free.” “I like to go out and dance. I like to show people what I can do, and that nothing can hold you back.”

"She was everything we're looking for," coach Wing said. "She's talented; she's a hard worker; she has a positive attitude. It was a no-brainer that she would be part of our team. … And what she's brought to our team, it's hard to even put into words. She has created a unique, special bond with this whole team. … She's just incredible."