And so the journey begins......

Hello Everyone!
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 the word about CMT.
CMT is one of the most common inherited neurological disorders affecting every 1 in 2,500 people.  It affects both sensory and motor nerves.  The motor nerves cause muscles to contract and control voluntary muscle activity such as speaking, walking, breathing, and swallowing.  This is a progressive disease and eventually can lead to weakness and muscle atrophy.  THERE IS NO CURE FOR CMT!

Carter's symptoms as of now are high arch, hammer toes, numbness in all toes, weakening muscles in legs and is showing some mild signs in his hands.  He is unable to bend his ankle, cannot walk on his heels and walks on his toes.  He is not in too much pain right now; just the numbness is bothering him.  We are still in the beginning stage of all the testing.  There are 40 types of CMT and we will hopefully find out soon what type he has.  We are going in next week for an EMG, a test that will help us understand how the muscle is weakening.  We will also be going in for a nerve biopsy within the next couple of weeks as well.
We have decided to look into acupuncture and physical therapy for him to help with the muscle weakness.  We have learned that swimming and cycling are best for him.  He is already an avid cyclist, so this works well.  He really wants to do a triathlon but we will see.  He said he definitely wants to do a bike race by the end of the summer.  One day at a time right now....

I know a lot of you are wondering how he is taking all of this....Well let’s just say this.
Cater said to me as we walked out of the Doctors office that day "Don't worry mom, Jesus is walking next to me, he is my best friend and this is the path I am supposed to be on."  "He won't lead me the wrong way."  "This is my challenge and I will be o.k."  I just squeezed his hand and smiled.  Carter's Challenge was born that day.

Love to All,

Michelle, Sean, Carter, Zachary and Ayden xoxo

P.S. PLEASE FORWARD IF YOU WANT! SPREAD THE WORD LETS FIND A CURE!