MHE and Me
Erin's Story
Hello.  My name is Erin Ivie Catherine Steele and I have MHE.

My mom first discovered these bumpy bones on me when I was in the first grade; I believe I was six or seven.  When I was hit by a car, for the second time I might add, I was in the hospital for a good two weeks or so when my mom was feeling my leg and felt something sort of like a sharp point on one of my leg bones. She didn't think much of it at the time, just a result from being hit. Well, when I was hit by the car I was knocked out for about twenty minutes or so, i woke up and I don't remember anything except being put into the ambulance. I had fractured my skull because of the impact, and as a result of that I was very sick, throwing up about every ten minutes. I probably threw up twenty times that one day!  All my family members think they know the correct story, but they are wrong, only I know it.  My mom, brother, one of my brother's old friends, Joey, and I were on our way back from my Uncle Vic's house when we decided to stop at a gas station when we saw a man on the corner selling flags, and Daniel, my brother, and Joey wanted a drink. We got out and after we looked at the flags my mom began filling up the car with gas and Daniel and Joey headed into the store. My mom thought that I joined them, but I was not that thirsty, so I went to the other pump across the little road for the cars to drive up to the pump, to get a squeegee to clean the window. I was on my way back to my mom's car when I suddenly froze right in the middle and a car, which was being driven by one of the workers for the gas station, pulled into the area way too fast, and ended up hitting me.

Now to my MHE.  Since the car accident I have been to the most amazing orthopedic doctor ever,  Dr. Devito.  I had my first surgery for MHE in the seventh grade, but that wasn't my first surgery. I had my first one in the fourth grade.  The doctor had to insert an external fixator because my left arm was shorter than my right. Once that was taken out a couple of months later, the bone began to curve so I was back to square one. Then, in the fifth grade they went in and put a metal rod to keep the bone from curving anymore. That was working ok until it moved up four inches, which was VERY PAINFUL!  Then they took out the rod and put in a plate. That worked well, and when they took it out the bone held up and hasn't done much movement. By the time I was in the sixth grade I had already had about three or four surgeries, and three or four casts. Sixth grade was a year of relief for me without any surgeries or pain. Once I reached the seventh grade that's when I started having surgeries for MHE, my first one included taking a bump off the top of my left wrist, one off the inside of my right leg, one off the outside of my right leg, and one off the inside of my left leg. That surgery went ok, until the doctor realized that I had been "blessed" with foot-drop.  Due to that I was in a wheelchair for a month or so, and I had to wear a brace on my left leg, and two on my right. Boy, wasn't that fun?  Once I was allowed to ditch the wheelchair I had to use a walker.  It was hard having to do all this while I was in seventh grade. I hated it.  Kids aren't supposed to be using walkers and riding in wheelchairs. They're supposed to be able to run around with others and not worry about stuff like that. I wouldn't have gotten through it myself without my mom, my family, and my supportive friends. I am scheduled for another surgery on November 20, 2009, at the wonderful Children's Healthcare of Atlanta.   The doctor is going to go in and take one off of my left ankle and one off of my left outer leg.

Even though MHE is a big part of my life, I don't  let that control my life completely. I like to play sports, especially tennis and volleyball.  I like running and walking at school and at home. I love music. My favorite singer would be NeverShoutNever; Cristofer Drew. But I will usually listen to anything just as long as it has a good beat and can keep my attention.  I live with my mom, brother, and two dogs. My mom's name is Tammy, my brother's name is Daniel, and my dogs' names are Toby (that's Toby in the picture above) and Reba. If you didn't catch the names of the dogs relating to country singers, then there you go, they do. Toby Keith and Reba McEntire. I think that I like writing; it really depends on what I have to write about.  When I get older I want to be a teacher, veterinarian, or a weather girl. I haven't ever met anyone else with MHE, and I am the first and so far only person in my family with it. I would love to hear from other people with it and how you like dealing with it, so if you want email me at,  I would love to hear from you!


Read Erin's Poem: 
"What MHE Means to Me"