Editor’s note: This blog is adapted from remarks Joe delivered today at the opening session of the 2016 MDA Clinical Conference
MDA has been a part of my family’s life ever since I was diagnosed with SMA Type 2 at the MDA Care Center at Children’s Hospital Colorado, and being a part of the MDA family has been nothing but positive for us.
Growing up in Ft. Collins, Colorado, I travelled with my family to receive treatment and expert care from Dr. Dennis Matthews in Denver, about 65 miles away. The drive there was always exciting. My sisters and I loved to go on adventures, and hospitals were never scary places to us, especially since both of our parents were medical professionals.
The drive back, however, was often a different story. My mother always asked the doctors not to give her any bad news and, if they had to, to say anything negative in the most positive light. The neurologist who told my mother about my diminished life expectancy really took that to the next level when he said I would live “a very strong 12 years.” Talk about putting a positive spin on a negative.
News like that nevertheless made the commute home more intense and less celebratory. But despite what we learned during our visits, I never longed for a life different than I was living (except maybe Beyonce’s life: I wake up every day wishing I were her).
Now that I’m an adult (and I’ve proved that euphemistic neurologist’s prediction wrong) I’m often asked if I’m upset that I may not benefit from the progress in medical treatments and advances in clinical trials being made every day. I always answer that I believe there’s a reason I was born in 1991, not 2001. We all have our way of making an impact in our lifetimes and, if we are lucky, a chance to make a difference for the next generation. So it doesn’t bother me that I can’t participate in clinical trials. But I’m very glad that MDA Care Centers are critical nodes in the infrastructure that helps newly diagnosed families receive the treatments – and one day cures – they need.
One of the ways I’m making an impact is by serving as MDA’s first adult National Goodwill Ambassador and exemplifying what it means to “live unlimited.” If I’m “famous” for anything, it’s that I jumped out of a plane on my 24th birthday to celebrate doubling my life expectancy. The untold part of that story, however, is that even as an adult I consulted with the MDA Care Center before going skydiving.
You see, my mother was adamantly against my birthday plans. So I emailed Dr. Matthews to get his perspective. After all, I’d done research and learned that many people with physical differences had successfully skydived and lived to tell the tale. I asked him if there were any reasons to be concerned. Dr. Matthews wrote back simply: “Go for it.” My mother may still be a bit bitter about that.
But to me, this story really exemplifies how much the MDA Care Center team has become an extension of our family. To me, the hospital was a second home; I even liked the food! We had great relationships with our care team in Denver, and they have excellent connections with MDA families and individuals. Hospitals aren’t scary places when there’s a team of people waiting to take care of you and help you there. That’s why I wouldn’t trade my experience for anything… except maybe a day in the life of Queen Bey.
