Perspectives of The Pompe World

Yes, we do this for the attention.

Not for the attention it brings to myself, my family or even my daughter but for the attention it brings to this disease.

I want people aware. I want people to hear this story and ask “was my child screened?”

I want people who have experienced symptoms and think “could this be Pompe?”

I want people who are planning their families to be in the know about the genetic mutations they carry and plan accordingly if they’d like.

And more importantly, I don’t want what we experience to be hush hush. This sits at our table—good, bad and ugly. I want my daughter to know this life as “just the way it is” and not something to be ashamed about. It’s not a skeleton in the closet. It’s a big part of our lives and I’ll be damned if she ever feels like her condition makes any of us uncomfortable or inconvenienced.

So we are going to talk about this in every day conversation. Just like the weather and what’s for dinner. It’s not uncomfortable for us and it shouldn’t be for you. And if it’s uncomfortable for you, I urge you to ask yourself why that is.

If I tuck it up on a high shelf, that sends a message. And it’s not the right message for my family. So yes, I do this for the attention.

There are people losing years of their lives from this disease because it doesn’t get enough attention. Stopping that is more important than how anyone feels about how we handle the cards we’ve been dealt.