Michelle

MMA, Mut 0

My name is Michelle. I was born in 1984 with MMA, mut 0. I had many hospitalizations because I was acidotic a lot. I live in Michigan and my specialty doctors are in Grand Rapids and at the University of Michigan Hospital, two and a half hours away. I have an older brother, Jim, who does not have MMA. He is two years older than I. I had a little sister, Stephanie, who died from MMA at age eight. I also had a little brother, Andy, who died at age six from MMA. They both died eight years ago. Nine years ago, I received a kidney transplant and an auxiliary liver transplant. That means I have my native liver as well as an extra liver on board. The liver transplant failed. There was too much damage to the liver the doctors put in. I went home with my new kidney and was put on the list for another liver. I had to walk with a walker for awhile. My whole life I had very weak muscles because I had to restrict my protein. I vomited all the time even though I drank the low protein formula. At age five I got a feeding tube because I wasn’t gaining enough weight. I had a metabolic stroke at age two and had to wear AFO’s on my legs ever since. I also have some athetoid movements in my feet, arms and hands. So when I came home from the first transplant I had to work really hard to get strong again. A year later I got my second grafted liver transplant. This time recovery was very rough with lots of tests and torture. I went home in a wheelchair and a year later I could walk again. I had to work really hard in physical therapy. I cried a lot but I’m glad everyone made me work hard to walk again. I still have MMA but I don’t get acidotic anymore. Because of having MMA I was delayed in my physical development, speech, fine and gross motor development and in learning. I was in special education my whole life and I learned from all the great teachers I had. I took drivers training three times but I did not pass. They said I don’t react fast enough to situations on the road. Now I am twenty two. I work part time in a bakery and live at home. Sometimes I help my mom in her second grade classroom. My brother, Jim, lives in Chicago. He went to college there. My family was put through so much in my life. For three years I have been helping with the MMA research at the NIH, with Dr. Venditti. I figure I owe to my little brother and sister to help in anyway I can. The only thing that kept me going in transplant recovery for six months was thoughts of them. They died from MMA but I am determined to live. I would love to see research find a cure. Someday soon I hope to get my own apartment. I’m saving my money. I like to read, play games on the computer, go to movies, shop at the mall and listen to music. Every year my mom and I sing in a musical at church. If I can help other families with MMA, write to me or e-mail me.

Michelle
Belmont, MI
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From the Winter 2007 OAA Newsletter