I never in a million years thought that I would start a blog about a disease let alone a blog about my children fighting one. Yet here I am.....It was almost instinctual to write this. I didn't even hesitate, I just thought I have to do this so others will know about this disease. Maybe even help someone that doesn't even know they have it yet or help a mom like me through the steps.
So how did our journey begin?
Before June 27th, 2011 I had never heard of Charcot Marie Tooth Disease. Come to find out I was not the only one. So many people do not know about this horrible disease that affects just as many as MS. I remember the Dr. saying the name, Charcot Marie Tooth Disease and I must have asked him 3-4 times what? Can you say that again? He said "Don't worry I will write it down for you so you can do research. I felt some relief because now there was a name for what my son was going through but there was also a deep sadness for what he was about to go through. How do tell a 15 1/2 year old who is on the Cross Country team for his high school, you may not be able to compete. How do I tell him his dreams of being a Navy Seal since he was six are probably not realistic anymore? How do I tell my vibrant, outgoing, driven, funny teenager that his world is about to be turned upside down? Well I don't, because he is a fighter, he is driven and motivated and so am I. We are going to fight this thing together as a family unit and help spread awareness! I did not know at that time that exactly a month later I would be told my middle son, Zachary, also has CMT. I can only hope that he does not get as bad as his older brother and that my youngest will not have the same fate as his older brothers. If they do then at lease I know what I am up against. My daughter who is the oldest does not have it. My husband does not have it nor do I, well at least we think we don't. He shows no signs and I show some, so at some point we will be tested but the boys come first. Zachary has the same type as Carter but he shows more sensory damage than Carter. We believe that this is our destiny, to raise awareness and help find a cure. We are a strong family who has endured a lot and can endure this. the boys are handling this very well and are very open about their disease. We hope to provide all of you with knowledge about this disease, research, studies, fundraising and what it is like to raise kids with CMT. STAY STRONG AND BELIEVE! (Carters quote) |
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