Perspectives of The Pompe World

There are many special gifts exchanged between adults and children diagnosed with Pompe Disease. These two perspectives really highlight the spectrum of this disease and the importance of newborn screening.

As a mother of a child diagnosed, the diagnosed adults meant so much to me. For my family, they offered a real life view of the possibilities of living with this. Just the mere fact that there were adults living full lives with this disease breathed healing back into my shattered heart. When you read about this and stumble across the outdated information that convinces you your child won’t live past two, seeing adults who are well into their 50s instills hope.

All the wondering and worrying about what the future of my child would look like was diluted when I heard adults talk about the lives they lived. These adults gave me a new anticipation for my child’s future. They have shaped that future with their advocacy, insight, and determination to ensure that all who come after them will have more answers and better outcomes.

So to the ones who came before us, we thank you from the pits of our tender hearts and owe you a lifetime of gratitude. We know that you understand what your perspectives mean to us because you did not have them along your own journey. You paved the way and changed that road for children like mine. Your hardships and obstacles weren’t for naught and your journey is a gift to others. As one of the unlucky ones who spent too long in the dark, you provide the information that is used to treat those who come after you and we are just so incredibly grateful.

While you have just lived your lives with the cards you were dealt, you were creating the hope that gets us through the hardest days. There are not any words that could justly thank you for that, but, thank you, I do.