Sponsor Me in the MDA Muscle Walk

tl;dr Pledge to the MDA at my fundraising page.

On March 23, 2013, my family and I will be participating in the Muscular Dystrophy Association’s “Phoenix Muscle Walk”. We became involved with MDA when we found out that my son, CJ, has inherited the gene for Charcot Marie Tooth disease (CMT), a neurological disease that causes damage to the peripheral nerves, which carry signals from the brain and spinal cord to the muscles, and relay sensations, such as pain and touch, to the brain and spinal cord from the rest of the body.

CJ and Friend

CJ and Friend

We don’t yet know how badly it will manifest itself, if at all. Some in our family who have it are in significant pain just doing something as simple as walking. For others, it’s not quite as bad, but present. As far as my son… only time will tell, but unfortunately, it’s likely that he’ll be impacted in some way.

Some of you who know me well enough may also know that my son suffers from Childhood Apraxia of Speech (CAS). CAS makes it very difficult for him to communicate what he wants to say. When he was much younger, we just thought that he was slower than the other kids in learning to talk. It eventually became apparent that there was something actually wrong, and in trying to diagnose that, we had a series of genetic tests done. It was at that point that we found out he was positive for the CMT gene.

For the CAS, all that we can really do is provide physical therapy. Luckily, there are groups out there like CASANA that have been very supportive. Until we found them, we felt quite lost. We were told that our son had this affliction that we’d never heard of, and really didn’t know what to do. Once we found CASANA and the Apraxia Kids Facebook group, our outlook improved a bit. We finally got to speak to other parents who were going through the same issues, or already had. In short, we no longer felt alone in the battle.

With the CMT, we’re better prepared and informed, as this is something that’s not new to our family. But with MDA, we feel that same support that we did with CASANA. This past Saturday we attended an MDA luncheon event, and seeing the effort that they put forth into enriching the lives of affected kids and adults (altho in this case mostly kids) was simply amazing. The people there knew each other, and knew each other well. They go to these events regularly. In spite of being confined to wheelchairs, they laughed with each other, they talked, they saw Santa Claus and got gifts… they were family. For whatever struggles they face on a day-to-day basis, and I’m sure there are many, for this one afternoon, they simply had fun. And to be there and see that happen, that was a gift.

Having seen first hand just a glimpse of what the MDA provides for its members, and so many of them young children, I can’t help but feel that I need to do my part to help out. I’ll be walking on March 23rd, along with my wife and kids. I’ve donated a bit, and will likely donate some more between now and then… but I’m asking for your donations as well. If you could take a moment to visit my fundraising page and make even just a small pledge, I’d be eternally grateful. 100% of the donations go directly towards supporting the MDA. So please, if you can… help me. Help my son. Help so many others.

Thank you.