My doctor told me it was the worst case of CMT he had ever seen. When he tried to realign my foot, the large bone in my ankle (talus) broke. He was planning to fuse my bones together during reconstruction surgery in less than two months, but all that suddenly changed with the fracture. I was put in a cast and couldn’t bear weight on my leg for three months. When the cast was finally removed, there was little improvement in the curvature of my foot. Walking was beyond painful. After a bone growth stimulator was ineffective in helping me mend the break, we reviewed my options: A fusion with no end to my pain, or amputation. Yes, this is what it’s like to live with CMT. I opted for the fresh start, if that’s what you can call amputating your foot.

Today, I’m getting more and more comfortable with my prothesis, although I’m now experiencing tremors throughout my body and fall from time-to-time, which means more surgeries.

Finding a treatment for CMT would mean everything to me. If not for myself, for my daughter. She also has CMT, and I never want her to experience what I have been through. Her future is why I fight.

Curing CMT is as important as finding cures for cancer, AIDS and heart disease. CMT causes warping of the feet and hands, body tremors, incontinence, weakness, loss of balance and so many other things that make living extremely hard, sometimes impossible.

Being part of the CMT Research Foundation gives me more than hope. It gives me the promise that researchers are pursuing the most creative and innovative scientific studies to deliver treatments — if not for me, for my daughter.

You can give me and everyone living with CMT more than hope by making a donation to the CMT Research Foundation to fund the most promising research that’s solely focused on delivering treatments and cures during our lifetime. 

Together, we will end CMT today and for every future generation.