Perspectives of The Pompe World

Firstly, I think you’re perfect. You are so loved, so cherished, and wanted. I don’t have to try harder to love you as you are. It is natural, unconditional, and you are NO less in my mind and heart. Anything I think I may want to change about you would be for your quality of…

You’d think after all these appointments we have had, and will always have, this wouldn’t be an issue. It has improved along the way as we have adjusted and learned, but they always find their way to me as I prepare for the appointment ahead. No amount of coaching myself settles me until I get…

How am I going to tell them? It’s something I’ve wrestled with since the day my youngest was diagnosed. Her brother was only 2 years old then. How would I make a two year old understand what was happening inside his baby sister’s body? How could I explain it in a way that he understands…

That first year is the hardest. When you Google Pompe Disease and read something along the lines of how some kids don’t live to see their first birthday, it wrecks you. I remember thinking, “I’ve only got a year?” And I swear I don’t think I exhaled for the first time until we reached that…