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Incarnate senior credits God for leading her to twirling, diagnosis of rare medical condition

Watching Julia Jones twirl a baton has a mesmerizing effect. The metal baton glides through her hands with ease and across her arms and shoulders, as she twists and spins to catch it with every toss.

Julia described it as a freeing feeling. "My mind goes completely blank and all I am doing is focusing on my baton," said the senior at Incarnate Word Academy.

Twirling has been a part of Julia's life since the sixth grade. She spotted an advertisement for a baton clinic and saw it as an opportunity to try something new. She quickly took to it, staying after the clinic to watch the girls from the sponsoring team at practice.

Julia joined a local twirling team and excelled. On the morning of a state competition, she sneezed, which set off a muscle spasm. It was just the thing that her doctor needed to piece together the puzzle of random symptoms she was experiencing — headaches, pain, diminished strength in her arm, issues with balance and coordination and vision-related problems.

She was diagnosed with Chiari malformation, a condition in which the brain grows outside of the skull and crushes the spinal cord. It also was the cause of a second condition, Syringomyelia, in which a large cyst filled with cerebrospinal fluid formed within her spinal cord, leading to permanent nerve damage in her left arm.

"The smoothness of a baton might not be felt with her eyes closed," said mom Queanna Jones. "But a wool sweater would because of the roughness of the texture."

Julia had surgery at St. Louis Children's Hospital in seventh grade. While the doctors weren't able to repair the nerves, they stopped what could have become a much worse situation. Approximately 75 percent of her spinal cavity was covered with the cyst. If it had been caught any later, Julia likely would have faced paralysis.

Because of her medical diagnosis, Julia has challenges with coordination. With twirling, "it takes a lot of concentration, hand-eye coordination and practice," she said. "When you're doing a trick, you're moving your whole body. You then have to figure out where your body is, how you need to toss (the baton) and what you need to do under it."

After surgery, Julia took a year to recover before she returned to twirling. The experience taught her the value of hard work. "Twirling has taught me to have courage, perform under pressure, balance academics and athletics, bounce back after disappointments and be more confident in myself," she said.

As a member of Kelly's Kuties Twirling Corps, Julia has won numerous state, regional and national awards. She recently was accepted into the University of Arkansas and has an audition in April with the school's Majorettes twirling team.

Her Incarnate school family has been a tremendous support, both off and on the performance floor. While the all-girls school doesn't have a twirling team, she performs as a feature twirler at special events and at sporting events at Christian Brothers College High School.

Julia watched as her older sister, Oriana, attended Incarnate and knew she wanted to go there, too. "It's definitely comfortable, and a family experience," she said. "I couldn't ask for a better high school."

The school, sponsored by the Sisters of Charity of the Incarnate Word, has given her the confidence she needs to leave an impact on the world, she said. Last year, Julia joined with the Chiari Malformation & Syringomyelia Foundation and started a program to provide educational materials to St. Louis area physicians.

She spent the recent Martin Luther King Jr. holiday visiting doctor's offices, asking them to spread the word in their practices. "I want kids to be able to find out if they have it earlier so they don't have as much damage as I did," she said.

Julia said she sees the hand of God working in her life. "Looking back, I think I was meant to find twirling," she said. "I give God so much credit for that." 

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