Only a handful of people in the world have 35 years of experience with Glycogen Storage Disease. The disease management and parenting side that is. This blog is a way to capture the lessons learned from the years of emergency rooms, hypoglycemic children, and always knowing what time it was. This blog is also my way of helping the families around the world learn to laugh, love and live well with Glycogen Storage Disease.
I was blessed with not one, not two but three children with Glycogen Storage Disease and one without. The first question that may pop into your head after reading that sentence is, “How the heck did that happen?” It was the end of the twentieth century and genetic counseling was available. The disease is autosomal recessive; it takes two people with the recessive gene to produce an affected child. I always wanted a large family. At 21 years old, when my daughter Natalie was diagnosed, I heard the doctor tell me every pregnancy had a 25% chance the child could have the disorder. I am not sure if I was listening or just absorbing the words for a later time. My decision to have children went deeper than genetics. I make no apology. My sons are all contributing members of society. I love them. I wish their lives were easier.
I am a registered nurse and know some of the experts in the world of GSD on a first name basis. I am a pioneer in the fight to improve the lives of children and their families who live with GSD on a daily basis. Won’t you join me in my crusade.