Perseverance & Passion Posted on October 31, 2015 Perseverance can be defined as “doing something despite difficulty or delay in achieving success.” Passion can be defined as “a strong devotion to an activity.” Our thirteen-year-old son, Cooper, displays perseverance and passion on a daily basis like no other! I would love to share his story with you. When Cooper was about seven years old, my husband John and I began to see fairly quickly that he was behind his peers in terms of muscular strength, flexibility, and endurance. Two years of doctor’s appointments and two muscle biopsies in Arkansas failed to give us a diagnosis. We were referred to the Mayo Clinic in November of 2009 and received a diagnosis of Congenital Muscular Dystrophy (CMD) in February of 2010. CMD represents a group of muscle diseases caused by genetic mutations affecting some of the proteins necessary for muscles, and sometimes for the eyes and/or brain. In short, Cooper’s muscles were being attacked from the inside out in a way that would affect both his strength and speed in comparison to his peers for the rest of his life. When we first received the news, it was definitely a shock for our family, but also a relief. A relief that we finally had a name for what was attacking Cooper’s body, but also shocking in terms of how little understanding there was in the medical community regarding this disease. When the initial shock wore off, we had a choice to make, the same choice we all face when adversity stares us down: “What should we do next?” Cooper Fighting against CMD was not just an option. Anyone who knows Cooper knows it was the only option. Instead, the question was, “How?” How do you raise awareness for a disease that is more common, but less understood than people think? How do you contribute in a tangible way to help fight this disease? This is where perseverance and passion meet. Cooper’s dad, John, has a passion for taking care of our family, coaching basketball and serving others. As John went to work every day, coaching and molding the young players on his team to become the men and leaders they needed to be, Cooper’s fight against CMD was on his mind constantly. This could have taken a toll on John, but, when you are passionate about something for long enough, you find a way to make things work. When you are passionate about several things for long enough, you find a way to make them work together. After months of thought and planning, an idea began to form and take hold. When it was all said and done, there was a natural answer: start a basketball tournament… a junior high basketball tournament that raises funds for research for Congenital Muscular Dystrophy! The good news about this idea was that Bentonville already had the tournament in place (the Cat Classic). All it needed was a new name, a new focus, and a group of people dedicated to making it happen and doing it effectively. In the fall of 2010, the Cure CMD Classic was born. For the last five years, the tournament has provided quality competition for area teams, a platform for CMD awareness, and an opportunity for players to help raise funds during the week of the tournament for CMD research. To date, BHS Black and Gold players, as well as opposing teams, have raised approximately $20,000 for CMD research. While several tournaments these days help to raise awareness and funds for good causes, it is the reason behind these tournaments that makes the events so special. Beginning November 17, find your way to the CMD Classic at Bentonville High School and look closely at the Bentonville Gold Basketball team’s bench. You will find what you do every year: an incredibly special assistant coach and a great reason for a tournament. In the five years since receiving his diagnosis, Cooper continues to demonstrate perseverance and passion every day. In September of 2014, he underwent a procedure known as Selective Percutaneous Myofascial Lengthening (SPML) for the tendons in his legs. From this procedure, we have seen remarkable results in his balance, gait, flexibility, and most of all, confidence. It took a few weeks in a wheelchair and wearing braces on his legs, but, throughout the entire recovery, we never heard a negative word or complaint from Cooper! Our family feels like he never missed a beat! It has been a little over a year since this surgery, and Cooper is moving right along through junior high. cure CMD Just like his dad, Cooper’s love for sports runs strong. He is passionate about his role as the 8th grade basketball team’s manager, and of course, his role as the Arkansas Razorbacks’ number one fan! Cooper is such a wonderful example of what can be accomplished if you never give up. He is consistently showing this to us, our other two children, Mallory, 9, and Sutton, 5, his friends, teachers, and anyone who knows him.