Awareness is a wonderful thing. I think it’s great to see people come together for a common cause and try to bring change. But at the same time I find myself questioning whether most understand the issues they say they support. The ice bucket challenge is one of those instances where I think people have gotten caught up in the trendiness of the challenge without understanding what it is they are supporting.
I first noticed on my Facebook newsfeed that lots of individuals were videoing themselves having ice water dumped on them. In the beginning I didn’t even watch the videos because I figured it was just another crazy Facebook stunt that would quickly fade away. After several days, I finally became curious. I watched a video and although the person stated that they were doing the ice bucket challenge for ALS that was all the information they gave. Video after video I watched was much the same with no information about the disease so I finally became curious enought to start gathering my own information about ALS and was devastated by what I found.
ALS is a debilitating neurological disease that destroys the body’s ability to transmitt messages to the muscles of its victim. (This is my very elementary, simple definition.) The patient looses all muscle function and in the end they basically suffocate because their muscles atrophy to the point that the lungs cannot receive oxygen. They lose the ability to speak, eat, and do anything for themselves. The patient has a healthy mind trapped in a non-functioning body. It is a horrible disease and it breaks my heart that so many people suffer from its effects.
During my digging I found that the ALSA are doing research using human embryonic cells. That began to change my thinking on what I wanted to do to help this cause. As a Christian who believes that life begins at conception should I give money to help fund research that uses aborted babies to harvest stem cells? My decision was that I could not in good conscience do that. What about if the fetus had not been aborted but had been fertilized in a Petri dish for the purpose of creating stem cells? Was I okay with that option? Again, my personal conviction told me that it was morally wrong.
I am not trying to belittle the efforts of those who have done the challenge and I don’t stand in judgement of those who sent money to the ALS. These are simply my personal convictions. But, I also feel that there are many people just like me who are totally unaware of the practices of the ALS research being done. Just as those completing the challenge have the right to bring awareness to ALS I also have a right to bring awareness to how the ALS chooses to spend the funds being raised.
My family has chosen to make a contribution to an individual with ALS. Their medical costs are extreme and they struggle with not only the disease but the side effects of no income, medical costs, transportation costs, and many other things. There is more than one way to be a part of this cause. We simply choose to give on a personal level.
Our family knows the struggles of having a family member with a chronic medical condition. My youngest son has cerebral palsy which affects him in much the same way that ALS effects individuals. Thankfully, my son’s condition is not progressive but he has suffered with it since birth. He doesn’t know what it is to run and play like a typical child. He is very dependent on others for most everything. I understand what it is to live the life of a caregiver. There are hard days when you are exhausted both physically and mentally. My heart goes out to the families of ALS.
My son could possibly benefit from the same type research that an ALS patient could. Stem cell research is being done to try to lessen or eliminate the effect cerebral palsy has on a person. Even so, my family chooses not to support stem cell research done using embryonic cells of any kind. There are other types of stem cell research that have actually proven to be more promising that do not use embryonic cells.
I pray that my heart is heard from anyone who might come across this blog post. I have so much compassion for those suffering from ALS. I support community awareness and I pray that a cure or a treatment will be found. I simply chose to give in an alternative way that I feel makes a personal impact on an individual until such time that the current research practices change.