While in the gym this morning, someone asked me “…so why do you run?” Here’s my answer:
I run for my brothers.
Some of you may not know my story, so I’ll give you the Crib Notes version. In 1973, my brother Bobby was born. I was three years old at the time, and from what I’ve been told, I was excited to have a baby brother. However, shortly after birth my parents were given the news: Bobby had Type 1 Spinal Muscular Atrophy (“SMA”). This rare genetic disease, at the time, was one that not many people actually heard of. Bobby passed away 6 months after we brought him home from the hospital. When I asked what happened to Bobby, all my mother could say was that he had a “muscle disease”.
Then, in 1975, my brother Johnny was born. Again, my parents were given the news that no parent wants to hear: he had Type 1 SMA as well. Four months after he entered our lives, he passed away. Shortly after Johnny left us, my parents divorced and my mom and I moved in to a small apartment. My mom and I made the best of every situation from the moment we unpacked out boxes in the new place. We didn’t have much – my Mom would “rob from Peter to pay Paul” for a while – but our lives were pretty darn good. She never really allowed me to want for anything. She was and still is my hero.
I made a promise to myself long ago that I would do what I could to help fight this disease – and I am trying to keep that promise by raising money and awareness for charity. I’m doing this to honor my brothers, and my mom. My friends and I started Do Away With SMA (“DAWS”) in January 2014, in order to focus our efforts on fighting this disease.
A Quick Synopsis of Spinal Muscular Atrophy (“SMA”)
SMA, as described by the Spinal Muscular Atrophy Clinical Research Center within Columbia University’s Department of Neurology (http://columbiasma.org/about.html), is “a genetic disease causing degeneration of motor neurons in the spinal cord. Motor neurons are nerve cells that carry information from our brain to the muscle resulting in muscle movement. In patients with SMA these motor neurons are not fully functional resulting in muscle weakness and wasting.”
Some quick facts about SMA:
• It is the number one genetic killer of children in the world.
• Approximately 1 in 6,000-10,000 babies born are affected.
• One in 40 people are carriers – and most don’t know it.
• There is no approved cure for SMA.
• There are four types of SMA. Type I is the most common (found in 60% of the patients affected), and is the most severe. Types II and III are also diagnosed in a patient before he /she reaches 18 months. Type IV can first present itself in a patient at the approximate age of 18, but normally presents itself in patients around the age of 35.