Since the age of 2, Sophie LaFreniere has demonstrated strength and endurance in her long battle with glycogen storage disease (GSD). This month, her mother, Margot, will put her own endurance to the test as a participant in the Boston Marathon.
“I always wanted to run the Marathon, and wanted to do it for a good reason — and what better reason than to run for my daughter?” Margot says.
GSD is a rare and life-threatening genetic disease wherein the body is missing the necessary enzyme to convert glycogen to glucose. GSD has many forms. Sophie has Type 1B, which is the most rare, affecting only one in a million people.