Meet The Co-Captains

After my third child was born, I started noticing changes in my body. When my daughter was 6-months-old, I tripped on my own toes and almost landed on top of my baby. I decided to seek an answer for exactly what was going on. The doctor saw the difference in muscle tone on my arms and legs and I was sent to a Neurologist who eventually diagnosed me with Charcot-Marie-Tooth disease. After this initial diagnosis, I had numerous nerve conduction tests, a spinal tap that landed me in the ER, blood tests every month, visits to other doctors and finally a visit to a specialist who confirmed my CMT.

My biggest challenge came when I was told that two of my three kids had inherited this neurological disorder. I would cry myself to sleep at night and the feeling of guilt began taking over my life. Despite this, I refused to let my kids see how sorry I was. Instead, I decided to embrace my CMT and help my children do the same.

I investigated bracing for walking and running but with little success—the braces hurt more than the neuropathic pain. I hid them way on top of my closet (out of sight, out of mind). I’d avoid big crowds, long walks and park as close as possible to wherever I was going. In September of 2012 I had the opportunity to try the Allard ToeOFF Ankle Foot Orthosis (AFO) and I was sold. I received my first pair in December of 2012 and I was able to walk/jog my first 5K in February of 2013. I cannot describe the feeling of accomplishment as I crossed the finish line. It was such a high! As I began posting pictures from this event to Facebook, I became determined to educate others about CMT and bracing.

What I learned was that when you are vulnerable yet authentic, you reclaim your strength. Not everyone has disabilities but everyone has challenges, some are just more visible than others. I feel renewed strength and courage because I took back my life but sharing my story with others is even more important. By helping others find their own way forward I know my children will see that nothing is impossible for them; they are limited only by their imagination now, not their CMT.

After my third child was born, I started noticing changes in my body. When my daughter was 6-months-old, I tripped on my own toes and almost landed on top of my baby. I decided to seek an answer for exactly what was going on. The doctor saw the difference in muscle tone on my arms and legs and I was sent to a Neurologist who eventually diagnosed me with Charcot-Marie-Tooth disease. After this initial diagnosis, I had numerous nerve conduction tests, a spinal tap that landed me in the ER, blood tests every month, visits to other doctors and finally a visit to a specialist who confirmed my CMT.

My biggest challenge came when I was told that two of my three kids had inherited this neurological disorder. I would cry myself to sleep at night and the feeling of guilt began taking over my life. Despite this, I refused to let my kids see how sorry I was. Instead, I decided to embrace my CMT and help my children do the same.

I investigated bracing for walking and running but with little success—the braces hurt more than the neuropathic pain. I hid them way on top of my closet (out of sight, out of mind). I’d avoid big crowds, long walks and park as close as possible to wherever I was going. In September of 2012 I had the opportunity to try the Allard ToeOFF Ankle Foot Orthosis (AFO) and I was sold. I received my first pair in December of 2012 and I was able to walk/jog my first 5K in February of 2013. I cannot describe the feeling of accomplishment as I crossed the finish line. It was such a high! As I began posting pictures from this event to Facebook, I became determined to educate others about CMT and bracing.

What I learned was that when you are vulnerable yet authentic, you reclaim your strength. Not everyone has disabilities but everyone has challenges, some are just more visible than others. I feel renewed strength and courage because I took back my life but sharing my story with others is even more important. By helping others find their own way forward I know my children will see that nothing is impossible for them; they are limited only by their imagination now, not their CMT.