Living with CMT

I have this hereditary disorder called Charcot Marie Tooth Disorder also known as CMT. There are so many different types of CMT. The one I have is CMT1a. This disorder affects the nerves and muscles in my body. Mainly my arms and legs, but can affect other parts of the body as well. This often gets mistaken for having something to do with your teeth but it has nothing to do with them at all. Many Drs. do not even know what my disorder is. This is something that causes me not to be able to work. I have 2 biological sons and a step-daughter and a step-son. I have been with my fiance for about 11 years now and we were together as teenagers as well. I have known him since I was around 9 because I was friends with his sister. Maybe I will tell our story another time. I was first diagnosed around the age of 7 or 8. My family had no idea what this was until I was diagnosed. Then everyone on my dad's side had to get tested. Come to find out that my grandma, dad, aunts, and one of my cousins had it as well. When you have a child with this disorder there is a 50/50 chance that your child will have it. Well, this 50/50 chance hit myself as well as my two sons. They are almost 8 and 6. This disorder only gets worse as you age. My 6 year old has hip dysplasia in one hip and walks on the side of his right foot due to this disorder. My 8 year old has a very high arch and has hip dysplasia in both hips. This is something that I never wanted for my children. They both have orthodics for their feet also known as AFOs. This disorder can eventually put us in a wheelchair and cause our hands to curl up. This does not happen to everyone. Everyone is different but there is always that chance. The chance.... that is what kills me. The chance that my children could end up in a wheelchair is devastating. Now, this disorder has caused me to have depression. I was made fun of in school because of my AFOs and was outcasted because I couldn't do the same things as the other children, I couldn't run, I couldn't do squats or anything like that. I need something to pull myself up onto when getting up off of the floor. I am not like other people. I feel for my children as well because I know that they will go through the same things I did in school because kids are cruel. I wish people would teach their children that not everyone is the same and that some people may have problems. Living with this condition is hard. It is hard to get out of bed, sometimes I can hardly walk, I am in constant pain and there is no cure. I will always be in pain. My children complain of pain sometimes. It kills me to see them go through it and there is nothing I can do. I had surgery on my foot about 2 years or so ago and they reconstructed my whole right foot. Like my 6 year old son I was walking on the side of my foot, this was so painful. I can only imagine being that little and already going through that pain. I am trying so hard to not have him go through surgery but maybe it would be easier on him now than later. CMT is one of the worst disorders to have. This horrible disorder makes life complicated.