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My name is Taylor Walpole and I am twelve years old. Just before my eleventh birthday I became very sick and was hospitalized. This was the beginning of a very long journey, one that would last a lifetime. After many tests from Pediatric Cardiologists, Nephrologists, and Endocrinologists I was told that I had a rare life threatening disease of the adrenal gland. I spent the next year trying to find a doctor that knew about it and that would treat me. Finally, I found one at Schneider’s Children’s Hospital in Long Island. She did more testing and discovered that I was misdiagnosed and had an even more rare adrenal glad disease called Congenital Adrenal Hyperplasia. Mine wasn’t the common one that affects the number twenty-one hydroxylase, but it was the one that is extremely rare and affects the number seventeen. There are only about a hundred known cases worldwide. It is a life threatening disease that affects the heart, kidneys, and reproductive organs.
Part of me was relieved that I didn’t have that other disease, but the other part of me was nervous because I knew there would be new tests and news things to deal with. As with the first disease that they thought I had, this one gives me high blood pressure. I have high blood pressure on and off since I was born, but when it became more persistent the doctors knew something was wrong. When they did an echocardiogram they found out that my heart was enlarged from the years of high blood pressure. The medicine for this is different than high blood pressure medicine because they are trying to control the adrenal gland. The first one they tried didn’t work and now I am on one that is three times the strength of the first one. It has many awful side effects and it lowers my immune system. I already had to be on a special low sodium diet because this disease affects the potassium and sodium levels, but with the new medicine I have to take now, I have to eat low sugar, and high protein also.
This disease brought more problems too. I would still have heart and kidney problems, but now I will have problems with my reproductive organs as well. I might not be able to have kids, but I hope that works out when I get older. I had to undergo some very important tests in Long Island recently since these problems start with my development during puberty. The insurance company decided that since my specialist was outside of the insurance carrier area, they would only pay what they felt was “reasonable and customary”. That was less than half. With mounting medical bills, traveling expenses, and special dietary needs, my parents were worried.
Charity for Children stepped forward and helped us out. They are a very special charity that helps all children with diseases. There is no foundation for my disease and many others that children suffer from, especially the rare diseases. Charity for Children has taken us under their wing and given us their kindness, generosity, and hope for a better future for all children that are suffering. Thanks to Charity for Children I was able to get the tests that I needed to help me. Even though there is no cure for my disease, and I will have to undergo intensive medical treatment for most of my life, I know that if I needed help, Charity for Children will be there to support me in my time of need. Thanks for all you do for the children of Central New York. |
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Copyright 2012 Charity for Children, Inc.
P.O. Box 204 • Syracuse, New York 13206 • 315-234-1443
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