A few weeks ago, I got a call from a very pleasant woman telling me that someone (who preferred to remain anonymous) had decided that I was so fun and inspiring that I should be nominated to "go to jail for good" - the "good" being Muscular Dystrophy. What she basically meant is that I was being called upon to raise money for the Muscular Dystrophy Association via my own set "bail".
"Ugh," was my first thought. "I will hunt this so-called friend of mine down and make them pay. I have NO time for this." But being the type of person that would rather completely overbook her life instead of say "no", I agreed. But I knew I had my work cut out for me. First of all, MD isn't a disease that I'm close to. I have friends who have experienced many forms of cancer, multiple sclerosis, diabetes, and a host of other diseases that are still desperately in need of funding to find new treatments and cures. The only thing I knew about MD was that Jerry Lewis used to sing a bad rendition of "You'll Never Walk Alone" at the end of every Labor Day telethon.
So I began to research the disease, and was completely moved by what it can do to not only a child, but the family that supports that child. Here's the best explanation of the disease that I found:
"Muscular dystrophy (MD) is a genetic disorder that gradually weakens the body's muscles. It's caused by incorrect or missing genetic information that prevents the body from making the proteins needed to build and maintain healthy muscles.
A child who is diagnosed with MD gradually loses the ability to do things like walk, sit upright, breathe easily, and move the arms and hands. This increasing weakness can lead to other health problems.
There are several major forms of muscular dystrophy, which can affect the muscles to varying degrees. In some cases, MD starts causing muscle problems in infancy; in others, symptoms don't appear until adulthood."
And here's what families may have to face if their child is diagnosed with MD:
"If your child is diagnosed with MD, a team of medical specialists will work with you and your family, including: a neurologist, orthopedist, pulmonologist, physical and occupational therapist, nurse practitioner, cardiologist, registered dietician, and a social worker.
Muscular dystrophy is often degenerative, so kids may pass through different stages as it progresses and require different kinds of treatment. During the early stages, physical therapy, joint bracing, and the medication prednisone are often used.
During the later stages, doctors may use assistive devices such as:
* physical therapy and bracing to improve flexibility
* power wheelchairs and scooters to improve mobility
* a ventilator to support breathing
* robotics to help your child perform routine daily tasks."
Since 1950, the Muscular Dystrophy Association (MDA) has funded promising scientific investigations seeking treatments and cures for the muscular dystrophies. The Association makes every effort to support new experimental treatments whenever there is a reasonable scientific basis for doing so. Though there's no cure for MD yet, doctors are working to improve muscle and joint function, and slow muscle deterioration. It's tough to look at these poor children and wonder if they'll ever know what life is like without this disease.
During my research, I encountered an amazing blog authored by Josh Winheld, a victim of MD. As a fellow blogger, I was intrigued, and as I read it, I realized that the author had recently passed away, but his sister is keeping his legacy alive through the blog in the hopes of creating awareness and raising funds to find a cure.
I encourage you to read Josh Winheld's blog by clicking HERE. If you are as compelled by his words as I was, please consider donating by April 22 to my "bail" - which will go entirely to the MDA - by clicking HERE. I don't get anything out of it other than the satisfaction of helping these children and their families find a cure for this heart-wrenching disease.