By Ron Bevan | [email protected]

Entering the high school years can be daunting for most teenagers. For Taylor Tilby, the trepidation of being around that many new people was worse than for others. Sometimes Tilby would like to just blend in with the crowd. But Tilby stands out wherever she goes, due to a genetic disorder she was born with.

Now, Tilby stands out for another reason. Last month during the state high school drill team finals, Tilby, a sophomore at Jordan High School, was awarded the Heart of the Arts award by the Utah High School Activities Association.

“I was very surprised to get the award,” Tilby said. “I just like to go out and dance and that is what I have been doing. When I got the award I felt honored. To see everyone standing up and cheering me was amazing.”

Tilby, the 16-year-old daughter of David and Shannon Tilby of Draper was born with a rare genetic defect called Thrombocytopenia with Absent Radius (TAR) syndrome.

“Essentially it means she was born missing one of two bones in her forearms,” David said. “It is a genetic disease. Thrombocytopenia is the side that has a low blood platelet count which she doesn’t seem to have an issue with that. Radii is the forearm bone, which you are sometimes born without or, in her case, she doesn’t have forearms. Every person that has it has a different story.”

Taylor’s arms never fully developed, so her hands almost meet her shoulders. In addition, she has a prosthetic leg. But none of those ailments has stopped her from pursuing her first love: dance.

“All my cousins danced, so I wanted to dance from a very young age,” Taylor said.

So her parents enrolled her in classes at a young age. But one small problem stood in her way. In addition to her arms not being developed, Taylor was also born with a fused right leg. She couldn’t bend it at the knee.

“She had to dance on her knees because of her leg,” David said.

Because the leg would stick straight out when sitting down as well as causing her to walk with a pronounced hobble, the family decided for a surgery that would enable her to walk upright.

“When she was 3 years old the doctors took out the middle section of her leg. They took her foot and turned it around backwards and installed it where her knee would have been,” David said. “Now her ankle acts as her knee and her heel is her knee bone.”

Of course this surgery also meant Taylor would be without a bottom part of her leg and a prosthetic would be required. It took a while before the family could find the right type of prosthetic for her.

“Her prosthetic comes up higher than normal to help her put it on because of her arms,” David said. “The first prosthetic she had came with Velcro straps and it was hard for her to reach down and do it herself. A doctor at Shriners came up with a great prosthetic that she can pop on and off all by herself.”

It was important to her parents that Taylor could do whatever she needed to do without too much outside help. After all, at some point she would need to navigate the perils of life on her own. They made the decision early on to encourage her to do things on her own and to even participate in different activities.

“When she was little we would make her do things,” David said. “Maybe it was a case of dad being lazy, but she would ask me to help her and I would say no, you figure it out. And she would find a way and then get better at it and better at it and over the years she has learned to do almost everything she needs to do herself. There isn’t much we need to do for her. She has a helping stick to help her get dressed.”

Making Taylor’s life as normal as possible meant she had to try different things. At one time she was playing soccer, but found the game not to her liking.

But dance was a whole different story. Taylor found she could express herself in ways she couldn’t in other ventures.

“I started dancing with a group, but then found I liked dancing solo,” Taylor said. 

And before long, the young girl with a prosthetic leg and short arms was not only dancing, but competing. And winning.

“With dance she just figures out a way to do it,” David said. “It might take her longer than the other girls to learn it, but she just does it.”

Trophies started following Taylor home from different competitions. Then she began to dance with a friend and fellow classmate, Kenzie Tate. It was this combination that caught the eye of Lacey Wing, Jordan’s drill instructor.

“I had seen her compete in the dance world before she got to Jordan,” Wing said. “When I found out she was a student at Jordan, I reached out to her and encouraged her to come out for the team.”

Taylor Tilby, fourth from the left, earned the Hart of the Arts award for her performances with the Jordan drill team. (Photo by Sheri Tait)

Being on a dance team like Jordan’s Charlonians meant that Taylor would be in front of crowds numbering at times in the thousands. This was a bit disconcerting to Taylor, but more so for her mom.

“I was against the idea at first,” Shannon said. “But the more I talked with Lacey and Taylor, the more I thought we should give this a try.”

Having a coach that supported her along with a friend also trying out gave Taylor the confidence to put herself out there in front of people.

“When I am performing I feel like I have accomplished something,” Taylor said. “I like to go out and dance, I just love feeling included. I like to show people what I can do and that nothing can hold you back.”

But Wing and Taylor were clear on one thing: neither wanted Taylor to be put on the team out of sympathy.

“I selected her for the team based on talent alone,” Wing said. “She earned her spot. She is very talented. She is the girl on the team that never complains and always pushes herself. She is the type of athlete every coach dreams of having on a team.”

Taylor helped Jordan make it to the finals at the state drill meet her freshman year, and Jordan finished fifth overall in the meet. Taylor’s abilities caught the attention of UHSAA officials, who encouraged Wing to nominate her for the Heart of the Arts award this season.

The Heart of the Arts award is given annually to only one person from all Utah high schools. It is given to a student, coach, advisor or anyone who makes contributions in fine art activities, which includes music, debate, theater and dance. 

“It seeks to recognize those individuals who exemplify the ideals of positive heart of the arts, that represent the core mission of education-based activities,” said Jan Whittaker, assistant director of the UHSAA. 

In nominating Taylor for the award, Wing wrote, “What she has brought to our team is hard to put into words. She is just incredible. We as a team and as a community are better off having known Taylor. Taylor refuses to allow her condition to slow her down despite her limited use of her arms and a prosthetic leg. She consistently inspires teammates and coaches as she expresses her life through every practice and performance.”

Although the award was presented to Taylor through the UHSAA, it is actually a national award developed through the National Federation of High Schools. Now that Taylor is the 2019 recipient for the state of Utah, her nomination will be among others selected in eight different regions around the country, and finally one will be selected as the national winner.

Through it all Taylor has remained grounded to her family values.

“I don’t feel like I am an inspiration,” Taylor said. “To me it is just like I am doing what I love to do.”

Her mother, however, sees the Heart of the Arts award as a perfectly named award for Taylor to receive.

“When you watch her dance and you see the people applauding her, especially when they are from another school and hadn’t seen her before, you know she has touched their hearts,” Shannon said.