Stories about: Kawasaki disease

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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Giving thanks: Stories of volunteerism, gratitude and giving back

Thanksgiving Day is a time rich in family, gratitude and appreciation. In honor of the holiday, we are celebrating the patient families who have traveled through our doors and the selfless acts of kindness and volunteerism that follow.

Donating platelets and cycling for a cause

Ten years ago, Adam Nussenbaum’s son, Max, was treated at Boston Children’s and overcame a life threatening illness. Today, Adam gives his time — and platelets — to help those in need, and he is doing so in celebration of Max; his daughter Kate, who donated her bone marrow to help her brother; and the clinicians, who made his son’s recovery possible.

Shari Abramowitz, Max, Kate and Adam Nussenbaum
Shari Abramowitz, Adam, Kate, and Max Nussenbaum

For the past eight years, Adam has participated in the Pan Mass Challenge and raised over $55,000 to benefit the Pediatric Bone Marrow Transplant Center at Boston Children’s. He also donates platelets on a monthly basis.

“It has been immensely gratifying to know that I have and will continue to play a small role in helping patients like Max on their road to recovery,” he says.


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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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