Perspectives of The Pompe World

There is no right or wrong way to cope with receiving this diagnosis. You can be in every stage of grief in a single day or live in one stage for weeks. Maybe you skip some stages entirely. Maybe you never make it past a single one. There is no itinerary to grief. There is…

Autosomal Recessive. In short, it means every child we create has a 25% chance of being affected by the disease they inherit from us. Every child. So while wrapping our heads around the diagnosis of our second child, it hit us—wait…our first child could have this too?! Yeap. Talk about a kick while you’re down.…

Sometimes, my grief takes up only a moment of a day. Other times it’s a thief of the entire day. Sometimes I can sit with it calmly, and sometimes I wrestle it with everything I can muster. Many times it just sits lazily at my shoulders, or quietly down my cheek. It can be taunting…

Let’s talk about trauma. Mothers are holding their days-old infants down for procedures while they scream. Fathers are bracing their toddlers arms while needles draw the blood that will deliver the news. Pain, fear and discomfort for your child as you watch them cry—it will gut you. As parents, we understand necessity but that doesn’t…