When I was two, my entire body was swollen and I was in a lot of pain. I could barely open my eyes. None of my clothes fit me anymore, and my feet were so swollen that it hurt when I tried to walk. At first, the doctors did not think that it was anything serious. My mom and dad had to take me to the doctor’s office repeatedly until the doctor finally realized that it was a much bigger problem than a bug bite or allergic reaction. Finally, I met with my nephrologist that was two hours away from my home. He told us that I had Nephrotic Syndrome, and I was given Prednisone to help my kidneys get better.
Within the past several years, I’ve taken a lot of medications. I am still taking Prednisone but I have also taken other medications, including calcium carbonate, Norvasc, Ranitidine, Chlorambucil, and more. I really wish doctors could find a way to make Nephrotic Syndrome go away because I don’t like to be different than my friends. I can’t eat what they eat.
When I get sick with colds, it lasts longer than when my friends get sick – because of Nephrotic Syndrome. Over the past three years, I have been hospitalized nine times. Each time I was in the hospital, it started with me catching a cold or something. When I thought Nephrotic Syndrome was gone for good, I played T-ball for the first time. I was able to play every game. I had a lot of fun and made new friends, but I had to miss picture and trophy day because I was sick. I also took ballet, but I missed a lot of practices because I was sick. Now, I play soccer. I pray that I can play the whole time without getting sick.
Every night my family prays, and we ask God to heal me from Nephrotic Syndrome. I know that His angels are watching over me and that He will protect me. My dad tells me we are the body of God and so God does his work through us. So I also pray for the people that are working to find a cure that will help me and other kids like me get better.