Perspectives of The Pompe World

The beginning stages of diagnosis of a rare disease is truly a desperate time. Desperate for answers. Desperate for understanding. Desperate for a miracle. Just desperate in so many senses of the word. So, what did I do? I traded sleep for the internet in my fresh postpartum state. I inhaled any information I had…

In 2017, my husband and I had our first child. A sweet little boy we named Lincoln who was healthy, happy and perfect in our biased minds. He wasn’t quite two years old when we decided to try for a sibling. We proceeded without any idea that there was a 1 in 4 chance that…