Kid Captain uses artistic talent to raise money to fight arthritis

BY ERIC CLARK | OCTOBER 26, 2012 6:30 AM

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As Jacie Stewart awoke on a morning in April 2008, something was wrong. Her joints, mainly her ankles and her knees, were etrememly swollen.

Jacie’s parents, Chris and Alisha Stewart, took her to a local Des Moines hospital, where Jacie underwent numerous tests.

“We had no idea what was going on,” Alisha Stewart said.  

Four-year-old Jacie was experiencing incredible pain throughout her joints, and her parents were unable to fathom what might be the cause.

“We thought it could’ve been a reaction to a possible bug bite, but she hadn’t been outside the day before,” Alisha Stewart said. “We couldn’t pinpoint it.”           

After blood work and other tests ruled out the possibility of Lyme disease, bacterial infection, or leukemia, doctors at their local hospital determined that Jacie was likely experiencing arthritis.

They recommended the Stewarts to University of Iowa Hospitals and Clinics and Sandy Hong, a UI clinical assistant professor of pediatrics.

Hong, Jacie’s primary rheumatologist, helped diagnosis the then 4-year-old with juvenile idiopathic arthritis, a disease that affects more than 50,000 children in the United States every year.

“When I first met Jacie, she was carried in by her mother,” Hong said. “She has had her ups and downs, but she has never given up.”

For the first nine months of Jacie’s treatment, she was confined to a wheelchair because the arthritis made it nearly impossible for her to walk. Although she was undergoing treatment from pediatric arthritis experts at the UIHC, the medicines, therapy and care took a while to kick in.

Jacie started kindergarten and celebrated her 5th birthday in the wheelchair. However, her spirits never dampened.

“She was a really big inspiration to the entire family,” Alisha Stewart said. “Not once would you hear her ask, ‘Why me?’ She was confident and determined to get out of the wheelchair and beat arthritis.”

While Jacie has made strides in her fight against arthritis, she has experienced setbacks. She was diagnosed with celiac disease, which is a gluten allergy.

“She really has to watch what she eats,” Alisha said. “She’s very disciplined.”

For Jacie, eating something that has only touched a food containing gluten can set off the allergy, causing inflammation throughout the entire body.   

The effervescent 9-year-old has taken to art to cope with the disease.

“Jacie’s Rainbow Art” began when she started making bookmarks and greeting cards, decorating them with rainbows. She would sell her creations at local garage sales but did not keep the profits.

Instead, she donated them to the Arthritis Foundation. Her creations now have more variety, but she continues to donate her earnings to the foundation.

The Arthritis Foundation hosts the annual Jingle Bell Run/Walk at four locations in Iowa and more than 100 locations throughout the United States. On Nov. 11, the Stewarts, along with friends and family, will take part in the run/walk in Waukee, Iowa. Jacie plans to donate more of her earnings at the event.

Jacie and her family attended the home contest between University of Iowa and the University of Northern Iowa on Sept. 15, as she was chosen to be a Kid Captain for this week’s away game.

While Jacie could receive treatment at other hospitals, she refuses to go to any other besides the UIHC. Every four weeks, Jacie comes to Iowa City to receive treatment.

“The hospital is amazing,” Alisha Stewart said. “The doctors, the staff, everybody is wonderful. We love it there.”

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