On January 2nd, 2009, beautiful twin girls were born to my friend, Hillary. On February 19th, 2009, Hillary and her husband, Keith, received the devastating news that one of the twins, Zane, had the genetic disorder Spinal Muscular Atrophy, Type 1. She was only 6 weeks old. SMA is the leading genetic killer of infants. It is a terminal, genetic disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow. The mind and spirit are no different from that of a healthy baby, but the body eventually fails. Typically, babies with SMA Type 1 have a life expectancy between one and two years. They require around-the-clock medical assistance and monitoring. Zane passed away of respirtory failure due to her disease on June 18, 2009. She was just 5 1/2 months old. Thankfully, her twin sister, Avery, does not have SMA.
Since Zane's diagnosis, Hillary and Keith have been dedicated to spreading awareness about SMA and raising funds to support research for a treatment and/or cure for this horrible disease, as neither one currently exists. Approximately 1 in 40 people is a carrier of the genetic mutation that causes SMA. SMA is considered a "common" rare disease. How's that for a terrible oxymoron?
Until learning about Zane's diagnosis, I had never heard of this disease and I want to find as many ways as I can to help Hillary and Keith in their crusade to fight this disease in any way they can. In that spirit, I signed up our entire family to participate in a 5K on Sunday, September 26, 2010. Which brings me to my completion (or non-completion?) of item #56 on my list. We did participate in the race. We ran. We walked. We pushed strollers. We did not stop one single time until crossing the finish line 40 minutes after we started the race. So, I will unofficially say that I completed the goal since I did not run the entire time. But we did finish. And I'm proud of both myself and Dave for that. We're both horribly out of shape and had no motivation to train in any way, so finishing in and of itself is an accomplishment.
More than finishing the race, I am proud to be a part of helping raise both awarness and financial support for such a wonderful cause. Please consider helping in any way you are able to as well. Every little bit counts. You can make a difference in the lives of so many!
If you would like more information, or would like to support the cause, please visit the links below:
Sweet Baby Zane
Families of Spinal Muscular Atrophy
Gwendolyn Strong Foundation
That is so sad about your friend's baby. Good job on your race.
ReplyDelete