Perspectives of The Pompe World

Not today, Pompe. The majority of the time that phrase is used in the manner of triumph and strength. It’s with pride that I say it, knowing that Pompe isn’t getting us down. And some days, it’s dismiss. Not today, Pompe. Because today, I can’t. Because sometimes I feel exhausted and overwhelmed. Sometimes I feel…

Thank you to the people who first breathed hope into me during my darkest days. You found me, or I found you, and I can’t help but feel like everything changed then. You knew. You knew how I felt, because you had felt that too. You knew what I feared, because those fears were once…

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…