LECANTO — Kylie Rice plays competitive soccer.
She swims and dances and loves being bossy with her two sisters.
Kylie Rice, 11, also has scleroderma.
“When the doctor first said, ‘I think she has scleroderma,’ he said, ‘Do NOT go on the Internet. Promise me,’” said Kylie’s mom, Christine Rice.

It turned out that Kylie’s form of the chronic autoimmune disease is not the systemic, potentially fatal kind that attacks the internal organs, but a localized form that causes lesions that make the skin harden.
However, any time the doctors tell you that your 7-year-old has a chronic condition, you panic. Somehow, even if you don’t go on the Internet and read about the scariest of the scary cases, you learn enough to cry for days.
“It took us a while to pull ourselves together,” Rice said.
Since then, Kylie and her family have gone on to raise more than $20,000 for the Scleroderma Foundation of Florida, first as Team Kylie and now as Kylie’s Kause (www.kylieskause.org), a 501(c)(3) nonprofit.
They are planning a fundraising dinner dance Saturday, Sept. 24, at Citrus Hills Golf and Country Club. (See fact box for details.)
When she was a toddler, Kylie’s parents noticed a small brown spot under her left jaw and kept their eye on it. Then, the day before she entered second grade and went for her health exam, the doctor noticed it had changed.
That started a whirlwind of doctors’ visits, each doctor with a different idea of what it could be.
After she was diagnosed, Kylie was put on steroids and then on an immune suppressant. She got “chipmunk cheeks,” bushy hair, mouth ulcers and achy muscles.
Today she’s in remission, although the lesion on her jaw will never go away. She also has a lesion on her lower torso, and there’s always a possibility that she can develop others.
“Localized rarely goes into systemic, although the more lesions you get, the higher the chance that it does,” Rice said.
She said Team Kylie started a few years after Kylie was diagnosed.
“I’m a person that needs to do something, to solve something, and this was a situation that I had no control over,” she said. “I still don’t and I’m still learning how to cope with that. I can’t fix it and I can’t make it better.”
About two years ago, a bunch of friends organized a Team Kylie event at Burke’s of Ireland in Crystal River and raised more than $5,000.
Rice took a year off to get better organized and formed Kylie’s Kause.
“We work hand in hand with the Scleroderma Foundation of Florida and do the annual walk. All the money goes for research and helping with medicine for pain and also for caregivers,” Rice said. “There are a lot of people, including children, with scleroderma who are a lot worse off than Kylie. At the national convention we met a girl who couldn’t move at all, but she had the best attitude.”
Kylie, too, believes scleroderma doesn’t define her. She knows she must use sunscreen and moisturizer and needs to wear gloves when it’s cold out because her hands get stiff.
At age 7, Kylie spoke at the annual Scleroderma Foundation luncheon where she met “Grandma Greenspan,” who took a liking to the little blond-haired girl. Mrs. Greenspan turned out to be actor Jason Alexander’s mother. His half-sister has scleroderma.
Kylie has asked to speak at the Sept. 24 event. At 11, she’s confident and comfortable with herself and unafraid to be different.
“Scleroderma can’t stop me,” she said.
“We don’t think about it much anymore — her scleroderma isn’t 24/7,” said older sister Erin. “In the beginning it was, but now when I look at her I don’t see the scleroderma. I look at her and she’s just Kylie.”

* WHAT: Fundraiser for Kylie’s Kause, including a dinner, dancing and silent auction. All proceeds go to the Scleroderma Foundation of Florida.
* WHEN: 7 p.m. Saturday, Sept. 24, 2011.
* WHERE: Citrus Hills Golf and Country Club, Hampton Room, 505 E. Hartford Street, Hernando.
* INFO: To donate or sponsor a table, email Christine Rice at christine@kylies kause.org.