Hi!  My name is Victoria. I am ten years old, and am going into the 5th grade. I am very small for my age, because of MHE. I get great grades in school, but my printing isn't the best. My hands and fingers get sore very quickly.

I was diagnosed with MHE just before I turned two years old. I was the first and only person in my family to have MHE. I had my first surgery soon after I turned 2. I had a huge bump removed from my left wrist, and my ulna lengthened. I had four surgeries since then. I had one more on my left wrist, two on my left knee, and one on my right knee. I have another surgery coming up on August 6th 2003. I am very nervous about this one.  They are going to remove the bump on my left knee, but they are also going to lengthen my arm by using an external fixation. I have never had my arm lengthened this way before. I just don't know what to expect about anything with having the fixation sticking out of my arm.

I am in pain all the time. I am not able to do a lot of things that my friends can do. I have so many bumpy bones its hard to count, I even have them on my ribs. The first couple of years of school I had to go to the nurses office daily to take a nap. Now I go through the whole day, but am tired and sore when the day is done. My classroom is upstairs so I use the elevator to get to it.

There are always so many challenges, but I have a great brother, and a wonderful Mom, and we all go through it together. They are always there for me. So we go through everything one step at a time. We always seem to become closer when the day is done.

I would really like to have someone to talk to that understands what I am going through, and we could help each other. So if you want a friend please e-mail me at

Thank you,

Victoria's Story