Letters of Inspiration
I received this email on April 16th from Jennifer Page. In memory of Calen James Page...
Nicole,
The work you are doing for KD Research for a Diagnostic Test is tremendous. For many children, having a diagnostic test is the difference between life and death. It would have been for my beautiful son Calen James Page. This picture was taken the weekend before he died from complications from Kawasaki Disease.
Cal was born a beautiful healthy boy. When he was four months old he became very ill, and even though he had very competent doctors who were running tests and calling specialists, it took 3 weeks of testing and hospitalization to determine what was wrong with him. By then the Kawasaki’s Disease had ravaged his body and done extensive damage to his heart. The damage to Calen’s heart was among the worst that has ever been recorded. After spending many days in the hospital, Calen was able to come home. At home he had to have a tremendous amount of care.
Despite great care and devotion to keeping Calen healthy, on June 3, 2009, when Cal was 15 months old, his little heart could take no more and he was taken to heaven. As difficult as a journey this has been for us we must persist and try to find a way to stop this terrible disease. We have sent pieces of Calen’s heart around the world to be studied by the leading Kawasaki’s Disease researchers. While we cannot bring Cal back to us, every cent we raise and every action we take to raise awareness so that no other mother has to live without their child serves as a tribute to my son.
Thanking you,
Jennifer
(Calan is survived by his loving family Jennifer, Jim, Blake and Nadine as well as his extended family)
Nicole,
Wanted to give you an update on the quest for the diagnostic test for KD. We have a panel of 9 proteins that does a pretty good job of "finding KD". We need to run a verification cohort of controls. Running these samples again will get us one huge step closer to having a diagnostic panel.
There is nothing more important to work on than the diagnostic test. KD season has started again, we have 5 patients in the hospital. We do a great job of taking care of kids when they get to us, but we can't go out into the community and find them. We need a diagnostic test and that's the long and short of it.
I am happy to speak with any potential donors if they would like more information or to better understand how we are approaching this problem. We won't stop working on this until the problem is solved!!
Thanks,
Jane
Jane C. Burns, M.D.
Professor and Chief, Division of Allergy, Immunology, and Rheumatology
Director, Kawasaki Disease Research Center
Dept. of Pediatrics
UCSD School of Medicine/ Rady Children's Hospital San Diego
9500 Gilman Dr.
La Jolla, CA 92093-0641