After Charlie developed swollen lymph nodes and a high fever as a five-month-old baby, her parents, Megan and Joe, brought her to Lurie Children’s Emergency Department. Megan and Joe would wait on pins and needles for 15 days before they received a diagnosis for their daughter. Ultimately, Charlie was diagnosed with Kawasaki disease (KD), a condition that causes inflammation in the walls of medium-sized arteries throughout the body.
“An echocardiogram showed that Charlie’s arteries were huge — more like a six-lane highway than a dirt road,” says Megan. “At first we wondered, ‘How could the doctors have missed this?’ But we later realized they were doing everything they could based on the symptoms they saw.”
Infectious diseases specialist Anne Rowley, MD, has devoted most of her 30-year career at Lurie Children’s to discovering the source of KD. The disease is caused by a virus, and can irreversibly damage a child’s heart if they are not treated within 10 days of the onset of symptoms.
Charlie, now 5 years old, suffered long-term coronary artery damage that may affect her health as she gets older. During the wait for the diagnosis, she essentially went from being a healthy growing baby to having a form of heart disease more typical in older adults.
But children with KD may soon see better outcomes thanks to advances by Dr. Rowley and members of her lab at the Stanley Manne Children’s Research Institute. Earlier this year, they had a breakthrough in pinpointing the specific virus that causes KD, and this research has been submitted for publication. Now, Dr. Rowley’s lab is working to map the virus’ genome, which could lead to the first single diagnostic lab test to diagnose the disease and the development of an improved therapy to treat it.
The expertise of Lurie Children’s team is sought by physicians, researchers and families worldwide. In fact, cutting-edge research conducted at the Stanley Manne Children’s Research Institute at Lurie Children’s led to the development of the current standard recommended therapy for Kawasaki disease treatment utilized across the globe.
This progress is made possible in part by the current $10 million Children’s Research Fund commitment, which supports the full spectrum of research activity conducted at the Stanley Manne Children’s Research Institute at Lurie Children’s.
“This discovery really is a game-changer,” Megan says. “Now that researchers have these answers, all their energy and effort can be directed toward better outcomes. We pour our trust into the guidance of our incredible team at Lurie Children’s.”