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As a first-time mom, I often found myself worrying about my baby girl, Stacy. Little did I know that our journey would take a sharp turn when she was just eight months old. What started as a persistent fever turned into a whirlwind of misdiagnoses and uncertainty. In the midst of it all, we discovered a rare condition called Kawasaki disease. Today, I want to share our story to raise awareness about this lesser-known illness and shed light on the challenges we faced as a family.

Stacy was no stranger to illnesses as a baby. Allergies, sinus issues, and high temperatures seemed to haunt her little body. When her fever spiked to 103 degrees, I rushed her to our pediatrician, seeking answers and reassurance. However, I was met with dismissive advice and a plea to let her “sweat it out” under a blanket. My motherly instincts kicked in, and the next day, her temperature soared to 104 degrees.

Desperate for answers, we rushed to the emergency room, where we were told that it was a viral infection that needed to run its course. But Stacy’s condition worsened rapidly. Her skin started peeling off on her feet, and she developed throat and ear infections simultaneously. Alarmed by her deteriorating state, we sought help at a different hospital. It was there that our persistence paid off, and Stacy was admitted to intensive care.

As Stacy’s condition worsened and weight loss became a terrifying reality, I pleaded with doctors at each hospital to refer us to Riley Hospital for Children, hoping for much-needed answers. However, our requests were repeatedly denied, and we remained trapped in a cycle of uncertainty. Determined to advocate for my daughter’s well-being, I found solace in the compassionate support of a nurse who understood the urgency of Stacy’s situation.

With the nurse’s assistance, we made our way to Riley Hospital, where a team of doctors eagerly awaited our arrival. Finally, Stacy’s symptoms were examined in detail, and a doctor with a keen eye for rare conditions pulled down the blanket to reveal her peeling skin. It was then that he uttered the words that would change our lives forever: “She has Kawasaki disease.”

With a confirmed diagnosis, Stacy’s treatment plan commenced immediately. Kawasaki disease typically lasts 6 to 8 weeks, accompanied by numerous side effects. The most critical concern lies in potential heart complications, with the highest risk of fatality occurring within 2 to 12 weeks of onset. Additionally, Stacy experienced low hemoglobin levels, leading to a diagnosis of Failure to Thrive, necessitating hemoglobin shots.

Stacy’s battle with Kawasaki disease extended beyond the initial acute phase. Her blood vessels leaked for years, leaving her with veiny bruises on her arms, legs, and face. Throughout her journey, we relied on the expertise of Dr. Kleiman, an infectious diseases specialist at Riley Hospital, who guided us through the challenges that arose.

Kawasaki disease may be rare, but its impact can be life-altering for those affected. Our family faced numerous hurdles along the way, from misdiagnoses to unyielding healthcare providers. It was our unwavering determination and the support of compassionate individuals that finally led us to the correct diagnosis and appropriate treatment for Stacy.

Today, Stacy is a remarkable young woman who has surpassed every obstacle thrown her way. Our journey with Kawasaki disease has instilled in us a deep appreciation for medical professionals who go above and beyond to help families in need. Through sharing our story, I hope to raise awareness about this little-known condition and inspire others to advocate fiercely for their loved ones’ health.

– Connie Brown (Stacy’s Mom)