Like most other young men, my son Christopher has a need for speed and a love for anything with wheels. However, unlike most other young men, Christopher’s wheels are attached to his wheelchair. Christopher has Duchenne Muscular Dystrophy, a progressive muscle-wasting disease that can be caused by either an inherited genetic defect or a spontaneous gene mutation. In Christopher’s case, it is the latter.

At three years of age, we noticed Christopher falling down more than the average toddler. Despite reassurances from our pediatrician that everything was probably fine, we ended up consulting with a developmental pediatrician who ran blood tests. I still vividly recall sitting in the doctor’s office and hearing the words “muscle disease,” a frightening sounding result leaving me full of questions. As soon as I got home, I looked up “muscle disease” in the encyclopedia, where it mentioned Duchenne Muscular Dystrophy along with many of Christopher’s symptoms. I could hardly breathe as I read; “…it causes difficulty in walking at about the age of four years, loss of the ability to walk at about the age of 11, and death at about the age of 18 or later, usually due to respiratory failure.” Three months later his diagnosis was confirmed: Duchenne Muscular Dystrophy.

Fast forward to the present. Now fully wheelchair dependent, Christopher is a bright, happy young man with a great sense of humor who loves to read car magazines and play Xbox. For Christopher, a fiercely independent person, needing to rely on others is one of his greatest frustrations. To maintain his dignity, accessibility is considered before accepting any social invitation, and something as simple as independent use of bathroom facilities can become a nightmare. Being wheelchair bound even makes routine home life difficult for Christopher. Before Christopher’s Community was formed in 2005, getting his wheelchair into the bathroom was a challenge, and once in, he couldn’t reach the sink to wash his hands and brush his teeth. A shower was only possible with creative lifting and maneuvering. Swimming, an ideal exercise for his weakening muscles was dangerous without a lift for getting him in and out of our pool. Thanks to the success of the first “Fall Into Margaritaville” in 2005, we were able to install a ceiling track lift system, wheelchair accessible sink, and pool lift! What a difference it has made in our daily lives. Thank you to all who took part and made this possible for Christopher. Click here for pictures.

I believe my goal of Christopher having as “normal” a daily life as possible is one any parent would share. I exhaustively and fruitlessly researched funding sources for accessibility modifications for our home and vehicle. Many people believe that the MDA (Muscular Dystrophy Association) provides for this sort of expense. However, MDA’s mission is more research-oriented, and they direct the majority of their funds to help find effective treatments or cures for muscular dystrophy. They also provide a wonderful, one-week summer camp at no cost to families for which we are truly grateful. Christopher, like many other people who have muscular dystrophy, does not qualify for government assistance for modifications to our home and vehicle, and health insurance does not cover these expenses. We are left on our own to try to fund the equipment necessary for Christopher’s daily living. My friends were stunned at the lack of resources available to us for these expenses and formed Christopher’s Community to help Christopher and other children in the Tampa Bay area who have muscular dystrophy. Our family is so thankful to have the support of our remarkable friends, and we are excited about the prospect of helping other families deal with the financial stress that muscular dystrophy can cause.