A mother recounts her journey as her 3-year-old daughter battles Kawasaki disease, a rare and potentially life-threatening condition.
Ann Geffen is the Executive Director of the TANGO2 Research Foundation, an organization leading the way to cure TANGO2 disease. Prior to the TANGO2 Research Foundation, Ann was instrumental at several national nonprofit organizations including the March of Dimes, managing numerous accounts as a National Corporate Account Manager and Executive Director. Notably, she oversaw their largest national partner, amassing contributions of over $6 million annually. Her 14+ year nonprofit journey also encompasses roles at the American Heart Association and American Lung Association, where she championed fundraising and drove community engagement initiatives for thousands of volunteers in Central Florida. In addition, Ann holds a Juris Doctor from the Thomas Jefferson School of Law and a Master of Arts in Strategic Public Relations from the University of Southern California. She lives in Winter Garden, Florida with her husband, Dr. Joseph Geffen, and their two young children.
Transcript
Two years ago, I laid beside Aria, my three‑year‑old daughter. She was in her hospital bed. Since her birth, she had mostly slept by my side. And, that night, I felt even a stronger pull to be closer. I wanted to hear her every breath, watch every blink and movement. It was the longest night of my life.
Five days before this, Aria had begun to exhibit the hallmark symptoms of Kawasaki disease. Fever, red rash, swollen hands and swollen feet, irritability, and red eyes. The red eyes, that was when I knew something was really wrong.
My husband, who's a physician, suspected Kawasaki disease. I quickly turned to Dr. Google, learning it was a rare disease. And having worked for an ultra‑rare disease organization for the past four years, the word ‘rare’ echoed dire implications for me. No treatment, no cure and, worst of all, no hope.
I was terrified. I took her to the pediatrician and my worst fears were confirmed, Kawasaki disease, a rare condition leading to the inflammation of blood vessels. So, she was immediately admitted to the hospital.
There inside the dim hospital room, my anxiety manifested physically. My chest tightened, my heartbeat was erratic, and I couldn't get rid of the fear of something going terribly wrong. But even though it was a terrible situation we were in, I realized we were very blessed. Blessed to have caught it early, blessed for the availability of IVIG treatment, which is an antibody that was first introduced in 1952, and, most importantly, blessed by the presence of the best medical care.
The antibody treatment is through an infusion that takes roughly about four hours, but, to me, it felt like an eternity. I couldn't tear my eyes away from her and my anxiety skyrocketed. I was wide awake the entire night.
About halfway through, though, her body started convulsing and shivering that I'd never seen before in her entire life, and so I panicked. I was pretty sure that something had gone terribly wrong and I wanted to know if it was a seizure.
So I asked the nurse who quickly checked her temperature, but, oddly enough, it didn't register and there was none. But the shivering was still persisting.
The doctor finally came in. He was really calm, but I was completely terrified. He assured me it wasn't a seizure, but her shivers were unnerving, especially when her temperature was normal. He ordered warm blankets in hopes of calming her down, but, given the possibility of a fever, I listened to my mama instincts and requested for a cold compress.
After applying them, fortunately, her shivers started to begin to subside. Then, sure enough, another temperature check revealed that it was a fever.
Soon after her spike in temperature passed, she regained her comfort and went back to sleep. And so by morning, her symptoms subsided and so did my anxiety.
Slowly, Aria's personality began to emerge again. She is this resilient, fearless, worry‑free, joyful little girl and it was starting to show. That was when I finally felt relief. It was such a joyful feeling.
Then we were finally released from the hospital and, surely enough, things finally went back to normal. But for a while, though, I would worry and find myself checking her temperature obsessively. And every single time she gets sick, even to this day, I still worry about whether the disease will come back. But every smile and laugh from her heals me.
And even when I'm reminded of that scary time, I know that fear can quickly transform into joy. And the key to healing and recovery is having a child‑like resilience.
She has no worry in the world. It could be your age and it could be your personality, but it could also be just her. This time in my life was a reminder of vulnerabilities we sometimes face, but resilience, anybody can heal. This is a chapter of my life that reinforces my appreciation for modern medicine and gratitude to healthcare professionals.