The View from Chuckonia: Heading to the Slammer

There are two basic reasons why I, or anyone else, support an organization like the Muscular Dystrophy Association. And, basically, it is the two general purposes they serve. First, I want to support those individuals of all ages currently living with neuromuscular disease who need unique and expensive equipment and services to live independently and be as healthy as possible. Also, I want to see the research being funded and facilitated by the MDA yield cures for those diseases so that those individuals can declare victory in a world where no one else has to suffer them.

As I have written before, the blessing of my son’s good health and his ever-growing level of activity has served as a constant reminder of the goals of the MDA and the reality they seek to create for all children. While I know that he could, one day, be diagnosed with one of the diseases that MDA combats, he is currently far from limited in his mobility. One of the reasons I like supporting the MDA in my little way each summer is to help them create that future in which muscle disease doesn’t limit any child. Before Joey was born, however, I had another child to inspire me on that mission – and she has some limits that Joey does not.

My second year as a jailbird, 2010, was the summer that things started coming together in my participation in the Lock-Up. I started raising money earlier, built a strategy for seeking donations in various ways, and learned more about the specific ways that the Muscular Dystrophy Association serves those with muscle disease. However, it was at the event itself that year that my heart truly glued itself to this organization and its mission. In 2009, I didn’t get to stay at the event very long and did not get to meet the attending local patient, which the MDA Nashville folks usually bring in to serve as host for the day. In 2010, that was not the case. As I entered Fleming’s Prime Steakhouse (a fabulous restaurant near Vanderbilt University) and “turned myself in,” I was greeted by an adorable little blond girl named Emily. Emily was dancing and skipping and wearing the brightest smile. She, I assumed, was not a muscular dystrophy patient. For the first few moments, I figured she was the child of another jailbird or an MDA staff member. As I took a few steps in and around a dividing wall, I saw that Emily was leading me toward her older sister Sara. Sara, who was 7 or 8 at the time, was our local MDA Goodwill Ambassador and hostess for the day. Like her sister, Sara was an adorable blond girl with an unstoppable smile. Living her entire life with Type 2 Spinal Muscular Atrophy, Sara and her family were very familiar with the services provided by the MDA. Sitting in her electric wheelchair near the jail bars where each Lock-Up participant took a fun photo before hitting the phones to raise money, Sara and Emily were greeting all the jailbirds and thanking them for their support. When I first approached them, I froze for a second. All my life, I had seen Jerry Lewis featuring kids served by the MDA on TV and knew the title of “Jerry’s Kids” to represent those who needed the help of the MDA because they couldn’t enjoy all the things in life that many other children do. But, now one of “Jerry’s Kids” was right in front of me and she and her family needed that continued support to deal with a rare affliction that I couldn’t begin to understand. Also, she had a younger sister who had never known a reality beyond helping her sister with things that Emily (and me and Joey and countless other kids) could easily do. I stopped myself from getting teary-eyed and walked toward Sara with a smile. They, and kids like them, were the reason I was there and the reason I would keep coming (still are!). I knelt down to chat with Sara while awaiting my turn at the “photo-bars.” She was a charming little girl who seemed to have a very positive attitude. Little Emily, at only 4 or 5 years old, was obviously very supportive of her big sister and enjoyed being an entertaining part of the day for all of us. After speaking with them for a few minutes, I felt so proud that they were sharing their lives so that the rest of us would better understand the importance of MDA’s work. To be so young, they seemed to really feel a part of the mission. I asked if I could get a photo with them before I went to my table. They gladly agreed, and one of the MDA Nashville team members took my camera and made the picture.

Five years later, that photo is on my desk at work as a year-round reminder of one of the highlights of my summer and of two of the greatest inspirations for why I and many others go “behind bars” to raise funds to put an end to neuromuscular disease. I have included it in letters and e-mails that I send during my fundraising period each year since, as I have with some other photos from Lock-Ups past. As much as I treasure each memento from my times “behind bars,” that picture is still my favorite. In the picture, little Emily smiles like a movie star while holding Sara’s hand to remind the world that she will take care of her big sister and do everything she can to fight for a cure. Sara smiles with the pride of being the one MDA patient chosen to visit the Lock-Up as a local Goodwill Ambassador and with confidence that what we did in that room that day was to support her and other kids like her. I’ve seen Sara and heard from her family in the years since that day, but that first meeting will always be one of my most vivid memories and greatest inspirations as a jailbird.

It is appropriate that the Muscular Dystrophy Association uses a Lock-Up format for one of their fundraisers. Muscle disease is a prison that people don’t deserve and a sentence that must end. Let us who have any ability at all do what we can to help break those prison bars for them. As I post this, I have one week remaining until the 2015 MDA Lock-Up. I don’t know if I will see Sara and Emily there this year, but I will still be there on their behalf as I always am. Please join me by contributing what you can right now to the important work that helps Sara stay healthy, will help her live independently as she gets older, and allows her family to learn and do more to help her. Your gift is tax-deductible, and my bail-raising website is a secure avenue through which to give. You can also contact me directly to make other arrangements. Will you help blast the prison open now? You know the fight. Now, be one of the fighters!