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Friday, February 11, 2011


On any given day someone somewhere is going that extra step to make a difference. Being on the side that so desperately reaches out for the compassion of others, I can not say thank you enough for the generosity of those who give of themselves. Several months ago I spent the day with my two sons afflicted with Duchenne Muscular Dystrophy, along with my sister Marie, helping out at a Lock-up for MDA. Our job was to greet and tell our story to the representatives who came to make donations for MDA. Volunteering for this cause has become a big part of our world and speaking on its behalf is very near and dear to our hearts. While it is not always very easy for my sons Josiah and Cody to attend some events they willingly accompany me on request.

This day at the lock-up was a special time for us to share our story because we are involved personally in research. For the first time in a long time I felt I could talk about Duchenne with hope. My boys sat in their chairs next to me, quiet and feeling quite shy while I spoke about The PTC study my sons were enrolled in. PTC laboratories had enlisted several young boys to part take in a on going study using the drug "Ataluren". Research reports were indicating that Ataluren was showing signs of slowing the progression of Duchenne and in several cases some strength was being maintained. My sons both showed some healthy muscle tissue to be present, which told us something was deffinately happening with in their bodies. We had hope given back to us and that alone gave me the courage and energy to let anyone who cared to listen, learn that research was vital to my sons lives.

Both my sons being extremely shy stayed close to my side remaining very quiet. On occassion responding verbally to hellos or compliments but mostly smiling and nodding through out the day. Cody seemed to be relieved when I finally had no one left new to speak to and announced we could go. We graciously thanked all those who came out to help cure Duchenne. It was not until we headed home that I realized the real impact my openess to speak had. The two people who had the most to gain from hearing me talk were my sons. As I loaded my boys in our van, Cody simply said thank you mom. Surprised I asked why. He told me for not letting him give up on hope.

That night I sat in my room alone thinking about research, the study, my fears of allowing my sons - for the most part to be part of an experiment for this new drug. I thought about my desperation and anger I feel daily from watching my sons muscles waste away. I also thought about hope. I knew we had come a long way in research. Science understood so much more about this disease. But yet a cure for Duchenne still does not exist. However, I was happy my son had hope.

It is now several months later. Much has passed since that day. Josiah has undergone major spinal surgery and has had to relearn to hold his head up and sit unsupported. We continue to move forward even though at times there have been some set backs. I look at my sons and know deep with them is a drive and determination to fight. I believe that we are getting closer to cure and will not give up on my sons. But for the most part I still remain a skeptic to some degree and a hard judge to pass regarding this new drug. I cling to the hope that it is helping. When those low moments happen and we struggle to make sense of why, I turn to my boys. Watching them continue to hold on to their hope lets me know I am doing all the right things.

1 comment:

  1. for some reason I never finished this until today