Harrison's KD Story
Many of you have already heard Harrison's story, but if not it goes like this. In July we were planning our yearly trip to Portland to celebrate his cousin Hazel's birthday. Harrison had come down with a fever but after a few days of treating him with tylenol he wasn't getting any better. He seemed to have a fever but with no other symptoms or cause. No sinus congestion, no cough, no GI bug.....just this fever that wouldn't go away. After seven days of having a fever (Monday morning), we were in the pediatricians office who could not find any cause for his temperature so she sent us to do some blood work. We did a urine test in the office as well which came back negative for any infection. We left there and went straight to draw blood work. The following morning (Tuesday) he woke up with a fever of 106.6. He was burning up and barely moving at all. After giving him Tylenol, we rushed to the ER worried he would have a seizure at any minute. We spent the next 10 hours in the ER trying to figure out what was going on. CT sinus, EKG, Blood work, chest xray, urine cultures, echocardiogram....and on and on. Finally after all these test were completed the ER doctor came into the room and did a very thorough exam and noticed that one lymph node on the right side of his neck was slightly swollen. She then said the word "Kawasaki Disease" (KD) and our life changed forever. Our 19 month old had a very rare disease called Kawaski Disease but the good news is we caught it within the 10 day window which decreases the risk for cardiac complications. He was admitted to the hospital and the next morning he received a dose of IVIG and was started on high doses of aspirin. He responded well to the medication besides developing a rash. There was no damage done to his heart and after watching him in the hospital for four days we were sent home. Needless to say, we have learned a lot about KD. There is no known cause for this illness. No known diagnostic test. Diagnoses is done only by ruling out other medical conditions or by checking off a list of symptoms. Many children go undiagnosed and are sent home thinking they just need to recover from a "virus." Only leading down an unknown path which later in life causes heart problems such as heart attacks.
During Harrison's four days in the hospital he remained his happy self through it all. He played his ukulele for all the doctors and nurses as they came in to examine him. We had so many people who reached out to help us, including friends and family who watched over Makena for us. We are so grateful for all of you. But what we are the most grateful for is that he was given the proper diagnoses in the right amount of time.
We have become very passionate about trying to get more answers on KD. Through our own research we came across Dr. Burns and her team at Rady Children's hospital in San Diego. We have even added our family to her current genetic research. They are in the trial period for a diagnostic test which would determine if someone has KD or something else. I can tell you first hand that not knowing truly if it was KD was the hardest part of all. What if the treatment doesn't work because it isn't KD? Why can't they just have a diagnostic test to know for sure?
We reach out to all of you for a couple reasons the first being awareness. When your child goes through something like this you become passionate about learning more and trying to help. If you want to take the time to learn more facts about KD please follow this link:
The second reason we are reaching out to our family and friends is to help raise money for Kawasaki Disease Research. In 2015 Rady Children’s Hospital received a $2.5 million challenge grant from the Gordon and Marilyn Macklin Foundation to support Kawasaki Disease research. The foundation will match dollar per dollar raised up to $2.5 million. So every dollar you donate will be matched!
The 3 research focus areas are:
Here is a little more information about the grant if you would like to read about it. I have also confirmed that they are not doing any testing on animals.
We thank you so much for reading Harrison's story and for giving to the KD research.
Patrick, Julie, Makena & Harrison
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