Kawasaki Disease Stories: Calen Page

Calen Page

By: Jennifer Page

A committed group of people in Big Rapids, Michigan, are working to raise funds to support KD Research in the Quest for a Diagnostic Test. 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.

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 three weeks of testing and hospitalization to determine what was wrong with him. By then, Kawasaki 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.

In spite of his dire condition, he was a happy little boy who through the love and diligence of my family and his doctors thrived. Calen was always a trooper; he loved to play with his brother and sister, his grandparents and his dog, ―Willie‖. Calen’s giggle and smile would light up a room and bring a smile to your face that could not be erased. He loved strawberries and being outside, he loved Barney and the vacuum cleaner. For those who were lucky enough to know him, we knew he was an angel sent to bring us joy.

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.

I have made it my mission to increase awareness of KD at many levels. For the last two years, we have held the ―Annual Calen Page Memorial/KD Awareness Day Walk. The walk is supported by many members of our community and our families. Over 230 people participated this year. Besides the two-mile walk, we have a KD Awareness booth, which provides information about KD, its diagnosis, and the need for continued research to develop a test and a cure. A festive atmosphere is created during our event by students from the local schools who provide face painting and emcees for the silent auction.

The generosity of our community is overwhelming. Many people donate items for the silent auction. This year’s donations included more than 40 items, including a Kindle, homemade quilts, gift certificates, and handcrafted yard ornament. In the last two years, we have raised approximately $16,000 to support the KD Foundation. In conjunction with the walk, the local newspaper, the Big Rapids Pioneer, has printed several articles about KD
Awareness.

In addition to the Awareness Walk, I arranged for a pediatric infectious disease doctor from Helen DeVos Children’s Hospital in Grand Rapids, MI, to educate local doctors, nurses, and hospital staff regarding KD. I
have also shared info along with the new KD poster with our local health department.

The most satisfying part of this awareness campaign occurs when I am notified of a child being diagnosed early because of their doctor, friend, or relative has learned the common symptoms and has been diagnosed early. This year’s walk was very successful! We had approximately 225-230 walkers and raised over $7,000. We had four doctors who participated in the walk, and one of the pediatricians said that he had diagnosed 4 cases of KD in the past three weeks.