In the summer of 2016, my husband and I got sucker punched, lost our breath and our footing. Somehow– with white knuckles – we managed to hold onto our faith. A lifetime later, we are breathing, have firm footing and are on a mission to let the world know about the disease that we’d never heard of before July of 2016.
When we were in the early days of diagnosis, we struggled to find a community versed in Pompe. We didn’t know where – other than our wonderful doctors – to go for support. I also struggled with the inability to fix this. I wanted to fix my baby. (Ok, Universe. I should have paid more attention in Science class and, perhaps, not faked being an animal activist to get out of dissection exercises.) What I may lack in smarts, I make up for in squeak. I know how to get a wheel greased. Starting Gabriel’s Gale in December of 2017 was a way to do both. Simply put: We can build a community of support and get money to the smart people so they can keep making miracles.