The face of CMT
This is the face of Charcot-Marie-Tooth disease, called CMT for short. It is one of the most common inherited neurological disorders, affecting the motor and sensory peripheral nerves, and it affects roughly 1 in 2,500 Americans. So Addie is rare, in more ways than one.
The phone call
When I got the phone call with the results of her genetic tests a little over two years ago, my world as I knew it shattered into a million pieces. Even with my medical background, I had never heard of CMT. I remember hearing the words progressive, no treatment, no cure, and the rest was a blur. I have finally accepted the diagnosis, and I am actually thankful that we know. With knowledge comes power, and my husband and I are doing everything we can to slow further progression.
A true champ
Up until recently, Addie did not know what was wrong with her. She just knew that her legs did not work quite right. She has been a true champ through all of it, the doctor appointments, the tests, the serial casting to stretch her Achilles tendons, the physical therapy, and the night braces. She seems almost relieved that there is a reason behind it. She is a fighter and a great kid.
A world without CMT
Now that Addie knows, we are sharing her story with more people, both to bring awareness to CMT and to ask for support and prayers for a cure. There is so much exciting research going on right now, and we take Addie to a Center of Excellence for CMT twice a year so we stay up to date on the latest.
We want a world without CMT.
