Stories about: Kawasaki Disease Program

Back in Kosovo after life-saving surgery, Lis’s heart remains in Boston

Lis, who had Kawasaki disease, poses for his birthday.Like many kids, Lis Spahiu loves wearing his Boston Celtics and New England Patriots t-shirts. His mom, Zana, jokes that sometimes she needs to hide them so he’ll wear something else. But Lis isn’t a typical Boston sports fan. This 5-year-old from Kosovo has grown to love Boston, and its sports teams, after several trips to the Boston Children’s Hospital to receive life-saving care for his heart.

“In Kosovo, the health care system is very poor,” explains Lis’s mom Zana. “So when Lis contracted Kawasaki disease at 5 months old, he was misdiagnosed.”

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Thomas’ story: Overcoming Kawasaki, a rare pediatric heart disease

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Thomas after his second round of treatment for Kawasaki

It took three trips to the doctor’s office and consults with four different providers for Valerie Flynn to finally get to the bottom of her son’s suffering.

Thomas’s confluence of symptoms was puzzling: a high fever that wouldn’t go away for five days, all-over itchiness with a head-to-toe rash; bloodshot eyes and absolute exhaustion.

“Thomas’ doctors kept telling me it must be a virus and to give him Benadryl for the itch and Tylenol for the fever, but those did nothing to help,” says Valerie. “That’s very scary as a mom, to see all these professionals stumped. I was that crazy mom who brought him back three times and called multiple times a day. I knew something was seriously wrong and just wanted them to figure it out and help him. I knew something was seriously wrong and just wanted [Thomas’ doctors] to figure it out and help him.”

Five days after his first office visit, Thomas, 5, was diagnosed with Kawasaki disease, a rare and serious illness characterized by inflammation of the blood vessels. Kawasaki affects many different areas of the body: hands, feet, whites of the eyes, mouth, lips, throat, lymph nodes and skin. Without quick treatment, Kawasaki can damage the heart’s coronary arteries.

Thomas’ pediatrician recommended his family seek care at Boston Children’s Hospital and immediately referred them, sending the family straight to the emergency room.

“I thought we’d come in to a mound of paperwork and it would take hours to be seen,” says Valerie, “but it all happened so quickly because our doctor had called ahead. I was glad the doctors took Thomas’ case so seriously and got right to work to help him get better.”

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Recognizing and treating an atypical case of Kawasaki disease

It was a Saint Paddy’s Day that Jake and his mother, Nancy O’Connor, will never forget. While everyone else was sporting green, Jake’s skin and tongue started turning red, and the whites of his eyes eventually turned yellow. It was a medical problem that eventually led him to Boston Children’s Hospital where he was diagnosed with an atypical case of Kawasaki disease, a rare condition that can cause a rash, red eyes and mouth, and other inflammatory symptoms.  Most importantly, Kawasaki disease can lead to serious complications of the heart, especially if not treated in time.

Difficult diagnosis

feverJake woke up that March morning not feeling well. His skin was itchy and irritated, his tongue was swollen and his forehead was hot to the touch. Being a nurse and mother, Nancy has seen her fair share of flus, colds and stomach bugs—but the moment she laid eyes on her son Nancy knew there was something more seriously wrong with Jake.

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