Short synopsis for those who don’t want to read the whole thing,
Hello everyone, I am twenty-two years old and need help getting to back Washington to live with my mom and get reconstructive surgeries done on my legs. I was born with a genetic disease called Charcot-Marie-Tooth disease, but no it does not affect my teeth. It affects the nerves in my body, causing the axons to degenerate. I was born without one of the tendons in both of my calves. I am unable to work due to the progression of the disease, and need help getting home to my mom. Anything and everything will help, thank you for your time.
Hello everyone who has stopped to read my story, I am currently in the process of trying to get home to my mom so I can get reconstructive surgery done. I have a genetic disease called Charcot-Marie-Tooth disease, also known as CMT. This is a life long degenerative nerve disease that I was born with, it destroys the nerves in all of my body. Everyone with CMT progresses differently, and there are multiple different types and subtypes. I have CMT Type Two, which makes the axons in my nerves degenerate over time. CMT can also cause bone deformities in the affected areas, for me it mainly affects my feet and legs but is beginning to affect my upper body as well.
I was born with this rare disease, but I was also born missing the outer tendons in both of my calves. Either on their own come with needing complex care and surgeries, but both make even for more complex surgeries and care needed.
For me the disease made itself known when I was very young, around the age of eight years old I was unable to walk for very long. Many nights I’d go to bed in excruciating pain from the nerves in my body beginning to degenerate. However, I did not get a proper diagnosis until I was twelve years old. I was unable to play sports as a child, or participate in gym with my peers. My doctors thought that leg braces would help my condition, however it made the already weak muscles in my calves, even weaker. I wore the leg braces for three and a half years, and have been trying to correct damages done by said leg braces.
Unfortunately, medical intervention is the only way to truly help me. This genetic disease is quite rare, and there are few specialists. I need to be able to get home to Washington to be able to get the medical care I need before it is too late.
Realistically, I needed these surgeries done years ago. But I was stubborn, I wanted to be able to work and make the money myself. I never wanted to need to lean on my mother or others for help. However, my disease has gotten to a point in which I cannot work anymore. I suffer with chronic pain from the nerves in my body degenerating. I cannot stand for more than ten minutes without the blood in my legs beginning to pool, and for the pain to intensify. I can hardly get the things done around the house that I need to.
I have been self sufficient since I was fifteen years old, I am turning twenty-two at the end of September. I have desperately tried to do this on my own, but my disease has progressed to a point where I cannot no longer wait. I need to get these surgeries in order to not become wheelchair bound within the next few years.
I want to be able to walk on my own legs, even just for another decade or two. I am young, and want to be able to experience a self sufficient life. I want to be able to do the things I want to enjoy, I used to love hiking with my grandparents when I was little. I want to be able to hike again, to be able to do the dishes without needing to sit every few minutes.
Thank you for everyone who has read my story, anything and everything will help.






