When a child is diagnosed with Duchenne, a family's life is divided into "before" and "after". One day, you're just living your life, trying to figure out what to make for dinner, or wondering what your kids will be when they grow up. And then Duchenne comes in.
The diagnosis may be quick and straightforward or marked by years of doctor appointments and unexplained symptoms. Either way, it’s a shocking, merciless blow. Our old routines are shrouded in doctor appointments, endless medical tests, and piles of corresponding bills. Our lives are divided into "before" and "after"...comments you make, questions you ask, or conversations you have about your child are qualified with "before he was diagnosed" or "after he was diagnosed".
There is no instruction book. There is no manual, no roadmap, for this journey. A parent or family may no longer feel sure how to function or how to cope. We understand. But, together, we can find happiness in the heartache, purpose in the pain, joy in the journey. We are here to help.
This disease doesn’t happen in a bubble. Duchenne affects the entire family and their community. Boys are not only "Duchenne patients." They are someone’s son, someone’s grandson, someone’s student…cousin…best friend…brother. They have dreams and goals and so much to contribute. They are so much more than their diagnosis.
