Perspectives of The Pompe World

Thank you.

Thank you to the people on 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 yours.

You never judged.

You never dismissed.

You listened, you shared, and you took time to answer my desperate questions.

You shared parts of your life with me so that I could see another way; So I could see there is hope.

Finding you was the first moment I didn’t feel alone on an island with my worries and fears. Seeing your child thrive filled me with relief. Hearing your comforting words and encouraging explanations truly changed the trajectory of our journey.

You’ll never know how much your time and conversation meant to me as I cried through the scariest days of my life. If it wasn’t for the people who came before us, we’d never know this kind of hope. The community I have found in the rare disease community has been a key part in putting one foot in front of the other and taking back our lives. I have made lifelong friends in this community that came about from unlikely circumstance, but my life is only richer for it. I’d be lost without your encouragement, advice, and friendship.

From the bottom of my heart—thank you for being exactly what I needed in the time I needed it the most. And for being that for me every step of the way in this rare journey.