Over the past few years, my CMT (Charcot Marie Tooth disease) has progressed to the point that I am no longer able to walk or stand for more than a short period of time without significant pain and fatigue. I have watched my ability to participate in my favorite activities, work the jobs I have in the past, and even complete basic daily tasks, deteriorate rapidly.
This disability has especially impacted my left foot - my outward turned ankle, extremely high arch, curled toes, and tight tendons, make it impossible for me to put my foot flat on the ground. Dislocating my left knee last summer seemed to make things even worse.
After years of dealing with doctors and physical therapists who knew next to nothing about my disability and sobbing through appointments with surgeons who gave me absolutely zero hope, plus the one who said “we could always amputate,” I finally found an orthopedic foot and ankle surgeon in Los Angeles who specializes in CMT and has given me hope for the first time. We emailed back and forth, spoke on the phone a couple times, and then after way too many hours on the phone with my insurance, trying to figure out if this would be covered, I finally scheduled foot surgery for October 28th! This isn't a cure, but by working to straighten out my ankle and get my foot and toes flatter to the ground, I have high hopes that I will be able to stand longer, walk farther, and maybe even get a little hiking in again! After lots of physical therapy, that is.
Now here I am, doing something I really struggle to do, asking for your help. I am very privileged to have a job (especially right now!) and health insurance, but I still only make just enough to pay my bills each month and have a $7,350 out of pocket cost with my insurance. On top of that, I will also be taking a minimum of three weeks off work and traveling down to LA for my surgery. I will be staying in the city for five nights and then heading to my sister’s home for two weeks until I return to see the surgeon for my post op before heading back home. I’m hoping by then I will be able to get back to work since I am working from home, but I really won’t know until the time comes. I am hoping that if I can at least cover the cost of my surgery, I can handle the rest of the expenses.
If you have a few extra dollars or are even just able to share this with others who might, I would really appreciate it!
Thank you! <3
- Korin Schneider
- Kayleen Veatch