Kid Captain: Jacie Stewart

Oct. 26, 2012

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IOWA CITY, Iowa — Jacie Stewart is a budding artist with a message. She uses her creative skills to tell the world about juvenile idiopathic arthritis (JIA).

More than 50,000 children in the United States are affected by this debilitating autoimmune disorder. Occurring when a child’s white blood cells attack healthy tissue, JIA causes painful joint swelling, stiffness, and reduced motion–symptoms Jacie understands first hand.

“It started in April 2008, when Jacie was 4 years old,” says Alisha Stewart, Jacie’s mom. “Out of the blue, she woke up one morning in excruciating pain. Her knees, ankles, and other joints were completely swollen. She could barely stand.”

“It was scary,” adds Jacie’s dad, Chris. “We didn’t know what was happening.”

After ruling out several possible causes, the Stewarts’ were referred to Sandy Hong, MD, a pediatric rheumatologist at University of Iowa Children’s Hospital. Hong’s diagnosis confirmed that Jacie had JIA. She also had celiac disease, a condition that affects people who cannot tolerate gluten (a protein in wheat and other grains) and worsens JIA symptoms.

The Stewarts were stunned by the news, but Hong reassured them that effective treatments were available for their daughter, who by this time was confined to a wheelchair.

“Jacie got started on a course of medication and physical therapy right away,” Alisha says. “Dr. Hong wrote up a care plan for Jacie to get treatments back home, with follow-up appointments in Iowa City every few weeks. She explained everything as far as symptoms and what to expect. Jacie was never scared–she really took to Dr. Hong right away.”

That fall, Jacie started kindergarten. Even though she had to miss a few hours each day, several days each week, for physical and occupational therapy, she excelled at school. The medications and treatments were helping, as well. In March 2009, after 10 months in a wheelchair, Jacie took a big step–literally.

“The kids were lined up outside for the bus, Chris says. “They wheeled Jacie out, and she just stood up.”

“The whole schoolyard, dozens of little kids, pretty much stopped and stood amazed,” Alisha adds. “Then they started clapping for her.”

Jacie has overcome several JIA-related health issues over the past several years, including temporary peripheral blindness caused by inflammation of the front of the eye. She’s faced each challenge with a can-do spirit that inspires her parents and her brother, Grady.

Today, Jacie maintains a gluten-free diet and returns to UI Children’s Hospital every four weeks for a medication infusion that keeps her disease in clinical remission. She’s an outstanding student, and she hopes to take ballet classes soon.

Jacie’s also busy with “Jacie’s Rainbow Art,” which helps raise awareness for JIA because, “there’s lots of other kids with arthritis,” she says.

“I made a bunch of bookmarks, sold them at a garage sale,” Jacie says. “Next, my cousins and I are going to make greeting cards. It’s going to be pretty fun.”