The View from Chuckonia: Heading to the Slammer

The Muscular Dystrophy Association does a great job of keeping us jailbirds motivated during the weeks building up to our annual Lock-Up event. Some years, they distribute personal letters from folks living with muscular dystrophy or from the parents of children who live with some form of muscle disease. It’s great to hear from the individuals being helped by your donations and, with each letter, I feel more knowledgeable about the vital work being done by an organization I have come to respect and cherish. Here, I want to share a bit from some of those letters.

In my first Lock-Up post of this year, I mentioned my new friend Nancy who called me before the 2014 Lock-Up and introduced me to her service dog, Wilson, at the event itself. From her pre-Lock-Up letter:

"I have had Muscular Dystrophy since I was an infant. Growing up with MD, the highlight of my youth was attending summer camp. As a child attending a camp where everything centered around being able to participate in all activities it was very special. I remember wheelchair baseball, basketball, swim, fish and even riding in a hot air balloon! If I could still attend summer camp as an adult I would be right there.

MDA also has a clinic at Vanderbilt where I see doctors and a vocational rehab counselor. They help me come up with new ways to do my daily activities, get necessary equipment and helped me fill out paperwork to get my service dog, Wilson. Fortunately MDA has funds for batteries and tires for my wheelchair."

From Julie Rutter here in Nashville, whose precious daughter, Emily (her smile makes you think of a Shirley Temple film), has a form of MD, I received a heart-stirring, thought-provoking account of a family walking into a whole new world:

"Spinal Muscular Atrophy (SMA) is a progressive neuromuscular disease currently with no treatment or cure. Emily has never crawled, never stood up and never walked. But cognitively she is ahead of most milestones and, as she grows older, is increasingly aware of the way her physical abilities are different from those of her brothers and her friends…."

"The Muscular Dystrophy Association has helped us navigate our new reality. They provide clinics with access to top-notch medical professionals. MDA also offers support groups and an equipment exchange to help with the vast array of specialized equipment that is often not covered by insurance."

I had not heard of a pair of patients of neuromuscular disease within the same family until I received my letter from Bridget Sarver of Mount Juliet:

"Both my husband and son are part of a clinical study for their condition Charcot Marie Tooth which the MDA is helping to fund the research on as well as paying for their visits to the MDA Clinic. Most importantly in my eyes is my son Thomas’s trips to MDA Summer Camp annually, at no cost to my family. Summer camp gives my son time to meet with other children and teens who are going through the same things he is facing. He has been to three different camps in three different states and he has met a lot of individuals who are battling with multiple forms of Muscular Dystrophy as well as doctors and volunteers in a controlled and relaxed environment."

These families, and so many more like them, are reason enough for me to “go behind bars” every summer. Heck, for these folks, they could put me in a real jail for a while if it would end the bondage of muscle disease. They are also reason enough for YOU to open your checkbook a little, and your heart a lot, to support the amazing efforts of the Muscular Dystrophy Association. Every dollar helps and is well-spent. Give what you can now so that, one day, the letters will say “We won!” Join the charge to victory TODAY!