Perspectives of The Pompe World

I’ve seen some amazing things grow in less than ideal conditions. One of those things is the community that forms under unfortunate circumstance. I’ve expressed my gratitude toward having this community for nearly 5 years now and that gratitude only continues to grow each year. Something about Pompe Disease just feels less scary when you know you’re not alone. 

This weekend, we were fortunate enough to attend the second annual Pompe Family Meetup in the beautiful state of Indiana. There were around 70 people in attendance who are affected by Pompe disease in some way another. Some had Pompe, and the rest of us love those who do. Our families spent the weekend forming new friendships, nurturing old ones, sharing stories, participating in amazing events and activities, and surrounded by an overwhelming sense of community. The entire event had just enough attention on the disease itself, but the main theme was relaxation, fun, and camaraderie. 

Every detail was so well-planned and it was evident the amount of hard work put in by sponsors to ensure this event was helpful and enjoyable. Grants Giants went above and beyond to ensure a wonderful time was had by all. It truly takes a village and that village gave it their very best. I am overwhelmed with a sense of satisfaction and gratefulness for the way this event has been on my heart as we headed back home today to return to our lives. Spending time with this community was inspiring, encouraging, and truly wholesome. 

To see my child run through fields and explore woods with other children with Pompe really just does something to my heart strings. Seeing her sibling create friendships with other siblings of Pompe affected children had just as much of an impact, too. They were all so instinctively connected and you could see the joy on their faces as they enjoyed each other’s company. Being in an environment where you’re assured your child belongs, and that they’ll never feel alone in their journey with Pompe Disease is something I would spend fortunes on. I feel a sense of comfort in knowing my child will always have these other families to support her in her journey and that she will be a support for them too. I know the way I’ve leaned on other parents in this community have truly pushed me through my darkest days, and events like this one provide opportunities for the later generations to have the same. I feel enveloped in comfort and gratitude. 

Thank you, from the bottom of our hearts to Grant’s Giants Nonprofit and the volunteers for making this weekend happen. Thank you to Sanofi and Astellas for helping to sponsor such an amazing weekend that will be a core memory for families like mine. To the Breithbarth family, you are making such a huge difference in the world and we are all so grateful to know you and be a part of a community where you exist. You’ve truly given us a gift with this event and we will look forward to more.

“Community is much more than belonging, it’s about doing something together that makes belonging matter.”