Ask Me About Kawasaki Disease

My baby boy was 9 months old.


December 2004

Sweet, little Lucas had just celebrated his first Thanksgiving, was starting to pull himself to a standing position and was about to celebrate his first Christmas. One evening, we took him to Balboa Park, to what used to be called "Christmas on the Prado" to see the lights. He was all bundled up and tucked in tight to his stroller when our friend looked down at him and said "Wow, I never realize how red his cute little lips were!" I stared at him, wondering why we had never noticed this before.

My ex-husband and I were only 9 months into this parenting thing. Maybe the baby was cold? Maybe he ate something he shouldn't have? Thoughts raced through our minds. The next day he came down with his very first fever. We called the nurse line and doled out the proper dosage of infant Motrin and gave him a lukewarm bath. Our normally happy baby was crying, not sleeping and visibly uncomfortable.

Sunday, the fever continued on. His lips grew redder and started cracking and his eyes had become bloodshot. The fever would not break and we knew something was seriously wrong. Monday came with an early visit to our pediatrician. She made note that this looks "something like Kawasaki Disease" - but told me not to worry.. that was a very rare illness. She told me not to Google it and freak myself out. She put him on antibiotics and sent him in for a chest Xray to rule out pneumonia. 

This was before smartphones - with my day spent at doctors and caring for my sick, little baby, I actually didn't Google Kawasaki Disease...I was (blissfully?) ignorant of the disease, just trying to keep my baby comfortable.

Kawasaki disease (KD), also known as Kawasaki syndrome, is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children.

Day 5

That morning my ex went to work and I stayed home with my sick baby. His red lips were now swollen, cracked and bleeding. His fever wouldn't go down. He had a rash on his cheek and down his torso. And those eyes...

Then, he started wheezing. Frantic, I called the pediatrician thinking that he was having a reaction to the antibiotics she put him on. Her only response was "Get him to Children's Hospital immediately."

This is where I tell you how LUCKY we were that we walked into Rady Children's Hospital and almost right into Dr. Jane Burns, one of the top KD doctors in the country. At the time, many doctors weren't trained to recognize and treat KD, and far too kids were going undiagnosed. What I quickly learned is that KD has about a 10-day time frame for treatments to have a higher chance at success. It's once you go 10-days without a diagnosis that kids can have real issues. That's 10 days of heart trauma. That's 10 days of a severely sick child. We were lucky. We were on day 5 and standing in front of the best doctor we could have hoped for.

The doctors ran a battery of tests on Lucas that day. With no real way to diagnose the illness, they had to rule out everything else it could possibly be. Finally around 5 PM that evening, Lucas was admitted and an overnight IVIG treatment was started. I barely slept that night, watching my little baby hooked up to all those tubes and just wishing for the best and trying not to let my mind wander places it shouldn't. The next morning Lucas woke up smiling, his eyes were almost back to normal as he pulled himself up in the hospital crib and bounced like all happy babies do. I breathed deeply, knowing that he was on the mend. And while there would still be a few days in the hospital and multiple EKGs in our future, the IVIG worked and knocked out the illness.

Lucas was going to be OK.

I consider Dr. Jane Burns Lucas' angel. She quite literally swept in and saved my baby's life. Over the years I've actually gotten to know Dr. Burns on a more personal level, and I can honestly say she is one of the most amazing, inspiring women I've ever met. Her passion and dedication to figuring out this disease is like nothing I've ever seen before. Watching her talk almost makes me jealous that I lack the same type of passion for my life's work... Her excitement for every step forward her research is contagious and I have vowed to do whatever I can to help her in her quest to figure out what causes this illness, how it can be diagnosed in a timely fashion and how to help other kids and their parents not go through what we went through. 

My Pledge:

What I can do is minimal compared to what Dr. Burns does, but I like to think that every little bit helps. That's why I volunteer to help with the annual Kawasaki Disease Foundation Gala, Cooking for KD, and I help when I can with social media campaigns. I've had many friends learn about KD from me, and I will continue to use whatever influence I have to help the Kawasaki Disease Foundation and support Dr. Burn's efforts. 

KD's biggest challenge is that doctors still don't recognize it in time and most parents still have never heard of the disease. But thanks to the work that the Kawasaki Disease Foundation has been doing, people are starting to learn more. Additionally, after actress Sarah Chalke's personal experience with the disease, she used her influence to have the disease featured on a special episode of Grey's Anatomy. While still not a highly known illness, social and traditional media have helped tremendously to raise awareness about the disease. 

Education is important, but funding is key. Today, Dr. Burns and her research team are closer than ever to figuring out what causes the illness and how it can be diagnosed quickly and accurately.  And I'm dedicated to helping them whatever way I can so that no families need to go through the same thing we went through ten years ago. 

Help us celebrate Lucas' 11 year KD anniversary anyway you can. 

Donate to the foundation: here

Learn More: here