Each summer, children across the nation head to MDA summer camp for a week of fun. During this week the kids are able to participate in arts and crafts, swimming, fishing, different camp games and so much more. The thing that makes this camp so special is that the campers all suffer from a form of Muscular Dystrophy.
Muscular Dystrophy is the term used for more than 30 neuromuscular diseases. A neuromuscular disease is one that impairs the functioning of muscles, either directly or indirectly.
According to the National Institute of Neurological Disorders and Stroke, the muscular dystrophy disorders “differ in terms of distribution and extent of muscle weakness, age of onset, rate of progression and pattern of inheritance.”
While most forms of MD are commonly found in boys, the disease knows no gender boundaries and can affect anyone.
I have a form of Muscular Dystrophy. I was diagnosed with Charcot Marie Tooth when I was 2 years old. My parents brought me to see a specialist when they found out my father had CMT as well.
According to cmtusa.org, this particular form of MD affects the peripheral nerves, which are the nerves outside the brain and spinal cord. Just like there are many forms of Muscular Dystrophy, there are 90 different kinds of CMT. Each form is caused by a different mutation, and more causes are being discovered every year.
Someone with Charcot Marie Tooth may suffer from foot deformity, usually a high arched foot; foot drop, which means the inability to hold your foot horizontal; loss of muscle in the lower leg; numbness in the feet, difficulty with balance; and later, similar symptoms may appear in the arms and hands.
I have seen and felt the effects of this neuromuscular disease my whole life. While I do not look like I have anything wrong with me, I still suffer through many painful days because of this disease.
My father is starting to lose the feeling in his feet, and it hurts watching him and knowing that may be my fate one day.
There is currently no cure for Charcot Marie Tooth, or any other form of Muscular Dystrophy. That does not mean there aren’t people working everyday to find a cure.
The Muscular Dystrophy Association is working everyday to find a cure for each of the types of MD.
I am sure you have seen the shamrocks sold at convenience stores, or have seen local firefighters holding a boot drive to raise money.
Here in Ruston, the local Kappa Alpha Fraternity chapter raises money every year for MDA as part of their philanthropy.
It is because of donations from generous people that thousands of children are able to attend MDA summer camp each year. At each camp, the kids are able to participate in events they normally wouldn’t be able to. For one week, there are treated like any other child, and not like a child with a crippling disease.
My memories of attending MDA Rainbow Camp at Camp Bethany are some of my fondest memories from my childhood. I met incredible people, some who are still with us, and some who are no longer here because of their Muscular Dystrophy.
Each year at camp, we would gather around in a circle and talk about the day when we would all get together to burn every wheelchair, walker and leg brace.
That day has not come, but with your help we could get closer to finding a cure.
Next time you see a MDA shamrock at a store, spend the dollar to buy one. Every little donation helps. Participate in your local MDA telethon. If you would like more information, you can visit mda.org to find out about local events and more ways to get involved.
One day there will be a cure for this disease, but until then I will keep fighting to help find a cure.
This originally appeared in the Ruston Daily Leader