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Rare diseases challenge Bolingbrook girl, her family

Published: Wednesday, April 10, 2013 2:12 p.m. CST • Updated: Tuesday, July 29, 2014 10:00 p.m. CST

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BOLINGBROOK – Laughter is a powerful remedy, and while positive thinking, smiling and giggling might not be the best medicine for 4-year-old Bolingbrook resident Katie Churulo, it often helps her family cope with the young girl's disposition.

Katie is battling two rare, unrelated diseases – Truncus Arteriosus and Hemophagocytic Lymphohistiocytosis. As medical bills pile up, close friends, family and community members showed their support by gathering for a fundraiser at Tailgaters Sports Bar and Grill Friday night.

About 370 people attended the event, raising more than $21,000 for Katie and her family.

"It was an amazing fundraiser," said family friend and event organizer Dawn Swienton. "Katie is such a fighter and an inspiration to us all."

Tom and Stephanie, Katie's parents, describe their youngest daughter as fearless, outgoing and full of love and energy, explaining that she has "special way of doing things."

On this particular day last week, Katie dashes from the family's kitchen, sliding into the living room and onto her father's lap.

A smile from ear to ear, she giggles constantly, whispering secrets into the ear of her older brother, Lucas, before skipping down the stairs with her sister, Abby. Jacob, the oldest Churulo child, keenly watches everything, diligently protecting his baby sister.

"Abby, Lucas and Jacob are very aware of Katie's situation," Stephanie Churulo explains. "They are patient with her, protective of her. The four of them have always been really close."

Katie was born Aug. 8, 2008 – about one month premature – and was diagnosed with the rare congenital heart defect Truncus Arteriosus. The youngest of the four Churulo children, the 13-day-old Katie underwent open heart surgery to repair a hole between her left and right ventricles to prevent heart failure.

Although she was in critical condition the first 48 hours following the procedure, the surgery was a success. Katie even improved and stabilized without further intervention, a remarkable feat and testament to her strength, Stephanie Churulo said.

But the family remained conscious that Katie would need a second open heart surgery in the not-so-distant future.

"She had her second open heart surgery when she was 2-and-a-half years old," Stephanie Churulo said. "The doctors were amazed how strong she was and how quickly she recovered."

"We thought we wouldn't have to worry about surgeries for at least five years and it seemed like Katie finally caught a break," Tom Churulo added.

But in March 2012, just 10 months after her second surgery, Katie began running random, recurring fevers. After several more visits to the hospital and extensive blood work, doctors hypothesized multiple diseases but could not sufficiently diagnose the child.

Early last fall, the Churulos received a diagnosis: Hemophagocytic Lymphohistiocytosis (HLH).

An extremely rare immune system disorder involving over-production and activation of normal infection-fighting cells, HLH is unrelated to Katie's heart problems. Rather, doctors determined it is a partial genetic defect that might require a bone marrow transplant.

Meanwhile, Tom and Stephanie Churulo are currently trying to balance their daughter's steroid dosage and figure out the next steps.

"Difficult is an enormous understatement," Stephanie said, referring to the steroids that suppress her immune system, but yield multiple unwanted side effects. "We want to ween her off the Prednisone. Obviously this is not a long-term solution."

The Churulos explain that Katie's steroid dosage has resulted in weight gain, physical discomfort and, what their son Lucas refers to as, "roid rage."

The family is also trying to pay for the mounting hospital visits and intermittent trips to Ohio to see an HLH specialist.

But, in spite of the tumultuous last four years, they remain positive, thankful for family, friends and the many neighbors who have stepped up in their time of need.

"This would have been impossible without the support from Bolingbrook, Lemont and our friends and family," Tom Churulo said. "We feel blessed to have such amazing people in our lives."

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