They say the body holds the score when it comes to pain. I’ll never forget the ache in my chest as I watched my 2-year-old son, Jack, in a hospital bed. I wanted more than anything to take his place. But all I could do was hold his hand, advocate for him, and trust the incredible team at Rady Children’s.
It began with relentless fevers. We brought Jack to the Emergency Department at Rady Children’s, thinking it might be an ear infection or adenovirus. However, a concerning pink hue in his eyes eventually led to a more serious and rare diagnosis: Kawasaki Disease (KD).
Jack was quickly admitted to the hospital and began treatment. He received an infusion of immunoglobulin (IVIG) to reduce inflammation and protect his heart, along with a course of baby aspirin to safeguard his arteries. Our hospital stay became even more challenging when serious pulmonary issues arose. A CT scan hinted at a rare and severe form of bronchiolitis, raising the possibility of an ICU stay and intubation. Thankfully, after several tense days, both his KD symptoms and pulmonary issues improved. His bright pink eyes returned to normal, and—finally—his fever broke.
Throughout this ordeal, the incredible multidisciplinary team at Rady Children’s was by our side. Leading the charge was Jane Burns, MD, the Gordon and Marilyn Macklin Foundation Endowed Chair in Kawasaki Disease Care and Research, director of the Kawasaki Disease Clinic at Rady Children’s, and director of the Kawasaki Disease Research Center at UC San Diego. Dr. Burns is one of the world’s foremost experts on Kawasaki Disease. I had read about her work and knew Rady Children’s was among the top centers in the world for researching and treating this disease. Now, she was our guiding light.
Dr. Burns even involved us in her research. The team used an AI model to help confirm Jack’s diagnosis, analyzing subtle patterns in his symptoms that might have otherwise been overlooked. I felt immense gratitude knowing Jack was in the best possible hands.
Walking out of Rady Children’s with Jack in my arms was emotional. I couldn’t hold back the tears of relief and gratitude. The team at Rady Children’s had saved my son.
We are so lucky. Today, Jack is a healthy, thriving little boy. He loves garbage trucks, preschool crafts, and his big sister, Grace. Thanks to the quick action and expert care of the team at Rady Children’s, Jack has no lasting damage to his heart. And in saving him, the team at Rady Children’s also pieced this mama’s heart back together.
I still wonder why this happened—why Kawasaki Disease strikes and what causes it. But I know that Dr. Burns won’t stop searching for answers, and neither will I. We are now part of the KD family, committed to raising awareness and supporting the ongoing research that will one day solve this mystery. My hope is that one day, another family won’t have to go through what we went through.
Our journey with Kawasaki Disease was one of the hardest experiences of my life, but Rady Children’s was there for us. We are forever grateful to them, and my family will always be advocates for the incredible work they do.
Learn more about KD and how Rady Children’s is working to solve this mystery, https://www.rchsd.org/programs-services/kawasaki-disease-clinic/.
