It's that time of year again. The time where I bring out the horrific photo of my sick baby boy and beg for money and support... And yes, I am going to retell the story. And yes, I hopefully will make you cry... and donate some money...
My baby boy was 9 months old.
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.
Jason 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 our sweet boy had 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 and sleeping and visibly uncomfortable.
The next day the fever continued on. His lips grew redder and his eyes were a little bloodshot. Monday came with an early visit to our pediatrician. She made note that this looks "something like Kawasaki Disease" - but told us 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...but when he was admitted to Rady Children's Hospital the next day, I wish I had.
Kawasaki Disease is the NUMBER ONE CAUSE OF ACQUIRED HEART DISEASE IN CHILDREN. And going on 9 years later, doctors and scientists STILL don't know exactly what causes it.
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. Why was that so lucky? Because at the time, many pediatricians weren't trained to recognize and treat KD, and far too many parents were losing their kids to this disease. Our doctors diagnosed the disease in time for a successful treatment.
I use the term "at the time" loosely as well. KD's NUMBER ONE challenge is that doctors still don't recognize it in time and most people still haven't heard about it. But thanks to the work that the Kawasaki Disease Foundation has been doing, people are starting to learn about it. Thanks to actress Sarah Chalke for her influence to have the disease featured on Grey's Anatomy and thanks to Gary Busey for his influence, people are beginning to know more about the signs, what to look for and what questions to ask their doctors.
This year I sat with my little man, now 9 years later, as he once again had vials of blood drawn and hours of EKGs and tests. Once again I felt that tightening of my heart as the doctors reviewed the findings and examined him. Would they find something this year? Could heart damage appear at this point?
Once again we were lucky.
9 years later the worst illness or injury the kid has had since is his (currently) fractured wrist. And while with all the new changes to our life, I wasn't able to help as much as I would have liked, I am once again reaching out to my friends and family to help support this foundation during it's annual fundraiser.
Saturday, November 9th is the 5th Annual "To Save a Child's Heart" Kawasaki Disease Foundation Gala.
While the gala is actually sold out this year, I would love to be able to offer a sizeable contribution in Lucas' name.
Can you help? Anything from $5 up will help make a difference to kids and their little hearts world across the county.
This kid, thanks you.
