Addie’s Tale

More about Addie’s Story

This is the face of Charcot Marie Tooth disease – called CMT for short. It’s one of the most common inherited neurological disorders affecting the motor and sensory peripheral nerves. It affects roughly 1 in 2500 Americans. So Addie is rare…in more ways than one.

When I got the phone call with the results of her genetic tests a little over 2 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 – the rest was a blur. In the days and weeks that followed. I experienced a whole gamut of feelings from grief, rage, disbelief, depression, sadness and hopelessness. The fear of an uncertain future for my daughter brought out “mama bear”. I can say that I have finally accepted the diagnosis and I’m actually thankful that we know. Not that it doesn’t still hurt like hell but with knowledge comes power. And believe it when I say Brad and I are doing everything we can to stop further progression.

Up until a month or so ago Addie didn’t know what was wrong with her. She just knew that her legs didn’t work quite right. She has been a true champ through everything – all of the doctors appointments, tests, serial casting to stretch out her Achilles tendons, physical therapy, night braces, slant board, etc. Her therapist assured us that she would ask when she was ready and she did. She seems almost relieved that there is a reason behind this. It was time for her to know…her self confidence and self esteem were starting to take some hits as her limitations and differences were becoming more obvious. She’s a fighter and a great kid. She will be fine – I know that for a fact. I have to continually fight my maternal instinct to protect and shelter her. I have to give her the space to get outside her comfort zone (and most definitely mine) and empower herself to become more independent. It is great to see her experience the fulfillment that comes with every accomplishment…no matter how big or small.

Now that Addie knows Brad and I are sharing this with more people to both bring awareness to CMT and to ask for prayers for a cure. There is so much exciting research going on right now. We take Addie to Johns Hopkins which is a center of excellence for CMT twice a year. So we are up to date on all of the latest and greatest. We have a great local network of doctors and therapists too. We hope to start some fundraising efforts soon and would love the support when that happens. I want a world without CMT.