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
Such an inspiring story of a very strong young lady that never gave up! Bravo
CMT is tough. It has been tough on you and tough on me. Your desire to help us all inspired me to make a contribution to your effort. Thanks for caring. You are a fantastic human being. Good luck.
Thanks Timmy! It was amazing meeting everyone! What an honor and true inspiration.