The day we received Fritz’s diagnosis, we immediately felt as if the tectonic plates below us began to shake. All of a sudden, we no longer felt like we were navigating life on a smooth, flat surface. The ground beneath us shook violently, and when it finally stopped, a mountain appeared. A huge, Everest-like mountain, with steep cliffs and unclear paths. When the doctor gave us a packet of “maps” to help us navigate this mountain that towered over us, phrases like “but we aren’t hikers, we don’t want to go hiking, we haven’t trained to hike something so difficult” circled in our heads. So first, we cried, a lot. But soon after we knew we had to start preparing, because our son’s life depended on it.
We started by familiarizing ourselves with the maps we were handed at diagnosis. We studied the legend, we googled terms and websites given. We did our best to become accustomed with the terrain of this mountain we now refer to as Mount Duchenne. And we tried to understand basic hiking lingo like; Fritz’s mutation, steroids, clinical trials, exons, and dystrophin.
Aware that it is never safe to hike alone, we also talked to close family and friends about this new journey before us. We showed them the maps, and we shared our fears. We recognized the need for support in an adventure like this, so we asked if they’d help carry a pack and join us.
And as much as we would’ve liked to prepare more, we really didn’t have much time, (isn’t that one of the harsh realities of Duchenne). So we put one foot in front of the other, gripping our maps in one hand, and holding onto the people we trusted with our other, and we started; nervous, fearful, but knowing we just needed to start.