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Thomas‘ Story

Hello, my name is Thomas.   I am writing because I have Alports Syndrome. First off, the reason why I am writing is to provide hope for those who have been living with Alports and for those who just found out that they have Alports.   Before I go any further, always trust in your GOD. The story begins in 1984. I was a first grader at Concord Elementary.

The teacher thought I needed to work on my speech.   After spending two years in a preschool at a public school and a year of kindergarten at Concord, I was finally taking a speech class. During the speech classes, Mrs. Snow, the speech teacher finally discovered I could not hear as well as everybody else. I went to get my hearing tested and it turned out I needed hearing aides. What a difference hearing could make for a little boy. So much to hear the first day, tires humming on the road, grease popping, it was like a different world for me.

Two years went by and I was at my Dad‘s company softball game. I believe it was in July or August, all I remember it was really hot. We brought a winter blanket to sit on, but I was wrapped up and sleeping in it.   Something was not right and after the game we went to the hospital. At our local hospital the doctors discovered blood in my urine. They immediately sent me to the University of Michigan to run labs. The first couple of visits the doctors decided a kidney biopsy was needed. I was so scared, a kid should never have to go through things like this. I give credit to my parents since they kept everything together in front of me. I went to Motts Children‘s Hospital to have the biopsy.

The biopsy was successful and the result was Alport syndrome. At that time, I believe Alports wasn’t really well known. Some of the diagnosis was that I wouldn’t survive past 18 years of age, advised not to have kids, and I would be short. These are some things that parents don‘t want to hear. I had to go to the hospital at U of M, twice a year for checkups.   At first, I was always scared due to the blood drawing, this was probably the worst thing about having Alports, getting poked with a needle twice a year.

I am going to fast forward ten years, I am 18 years old and a little short of six foot at the time, and   I was graduating high school. Kidneys are doing well. I was still having my two-year checkups at U of M. In my twenties, all I cared about was being the life of the party.   I knew my kidneys were not as good as everyone else‘s but I never thought and did anything about it. I lived a normal life. But things did change, in a good way. I realized I was very fortunate for all the family and friends who prayed for me all these years and for the ones who loved me. I started going back to U of M and taking my meds. Those are my two responsibilities.   And now, I believe I have the best doctor I have ever had.   Dr. Puneet Garg. The only doctor that has ever put me in my place, and I will always cherish that.

I am now a thirty-year-old married father of two girls, Audrey Noel (3) and Kelsey Emma (10mths). I have a wonderful wife, Christy. We have been married going on four years.   I love my life and I want to do everything I can to stay around“¦healthy.   As for my kidneys, they are stable but getting slightly worse, but I knew these days would come.   I just want those affected by Alports to know, just stay positive and trust in your GOD.   He knows the way.