Growing up, I was an all star softball player and an avid runner. Nothing could hold me back from just about anything, from skiing to hiking, biking and kayaking. I was in school to get my nursing degree while I worked as an EMT which I loved doing. When I was 21 years old I worked down at the World Trade Centers as an EMT which set my asthma into overdrive. The many attacks I had landed me in the hospital and on steroids numerous times.
At 22 I had lost a significant amount of muscle tone in my legs, and developed avascular necrosis (is the death of bone tissue due to a lack of blood supply). I was sent to a neurologist who at the time treated all of the current problems I was having with the steroid (prednisone). After about a year of seeing no improvement, I wasn’t taking any excuses. I was put through test after test. I had both of my hips replaced after failed bone grafts at age 28, and by the time I was 29, I was pregnant and relying on crutches and a wheelchair to get around. I went back to my neurologist and demanded answers. After he was done looking over all of my testing, including the genetic testing that was done years before, the words CharcotMarie-Tooth came out of his mouth. Now it finally all made sense to me. I now know what I’m dealing with, and I’m glad I pushed for answers. Since I’ve had my son, I stopped relying so heavily on my wheelchair and started becoming more and more active with him. I play wheelchair softball now, and I tried my hand at modified ice hockey. I still kayak and fish. When it is warm out I would go walking or biking with my son every day. When it’s cold we find other ways to stay active. I still have my good days and bad days.
I am signing up for my VERY FIRST Five Boro Bike Tour. I need your help to find a cure for CMT. Please consider donating to my fundraising page to help me, my family and everyone living with CMT. Although CMT may have slowed me down a bit, it will never stop me. Thank you so much for your support. It means the world to me