11 months and 12 days is how long her oldest son Christopher lived.
In 1977, he was diagnosed with a very rare and fatal disease and two months later, he died.
It was twenty years before Kathie Strawn-Frazier learned the name of the disease that took Christopher's life-Krabbe Leukodystrophy. "Krabbe Disease, " as it is more commonly known, is a rare, inherited metabolic disorder that results from the loss of myelin in the nervous system. The most common form affects children before the age of one and can be so severe that most children rarely survive beyond the age of two. To date, there is no known cure for Krabbe Disease.
Kathie Strawn-Frazier still grieves for Christopher, sometimes it hits her so hard, it's like it's still so very fresh. She wrote this book hoping to help other young parents feel less alone after receiving such heartbreaking news about their infant. In recent years, she has been advocating for newborn screening of Krabbe Leukodystrophy.
A portion of the proceeds from this book will be donated to KrabbeConnect to help in the search for a cure for Krabbe Leukodystrophy.