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Hannah's Kidney Transplant

Organized by: Freed Drew

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THE STORY:

My name is Beth. I am the mother to Hannah, our only child, and the light of our lives. Everyone who meets her comes to love her. Hannah’s friendly demeanor and easy way about her makes her a joy to be around. In May 2010, when Hannah was eight years old, my husband Andrew, and I noticed Hannah didn’t look right. Her legs looked heavy and she constantly had a tired, puffy look to her eyes. A few days after Memorial Day, I noticed I could not find Hannah’s ankle bones or knee caps because the swelling was so bad in her legs. I took her to the pediatrician that afternoon and was told Hannah was suffering from Nephrotic Syndrome, a disease in which the kidneys are damaged, causing them to leak large amounts of protein from the blood into the urine. We were referred to a specialist in pediatric nephrology in Albany. Hannah began a high dose of steroids in the beginning of June. We were told that this medicine would take care of the Nephrotic Syndrome, and Hannah would be fine. Unfortunately, that did not happen. After six weeks on the steroids, Hannah’s protein never came down. Her specialist ordered a biopsy of Hannah’s kidney. The results showed our biggest fear. Hannah was not suffering from simply Nephrotic Syndrome, but instead Hannah has a disease called Focal Segmental Glomerulosclerosis (FSGS). FSGS is a disease that attacks the kidney’s filtering system (glomeruli) causing serious scarring. Very few treatments are available for patients with FSGS. Most commonly patients are treated with steroid regimens, most of which have very harsh side effects. Some patients have shown to respond positively to immunosuppressive drugs as well as blood pressure drugs which have shown to lower the level of protein in the urine. To date, there is no cure and there are no FDA approved drugs to treat FSGS. Some of the people you may know who have or continue to suffer from FSGS include, future NBA Hall-of-Famer Alonzo Mourning (transplant recipient), member of the 1986 World Champion New York Mets, Ed Hearn (3 transplants and continues to suffer from FSGS), and James Madison University All-American guard Dawn Evans (diagnosed in 2009). All three are Ambassadors for The NephCure Foundation, the only organization that is dedicated to finding the cause, cure and effective treatments for FSGS and Nephrotic Syndrome. Hannah is on many drugs, but has shown no signs of improvement to date. As the kidneys begin to scar, over time they lose their function and begin to shutdown. Hannah is facing dialysis and eventual transplant if this disease continues this course. We took her to Boston this past August to a specialist at the Children’s hospital. There, our worst fears were confirmed. Hannah most likely will reach end stage renal failure in five years. My husband and I want to find more answers to help Hannah’s condition. We have wanted to take her for third and fourth opinions and want to be able to get her the treatment she deserves. The NephCure Foundation can help. I thank all of you for taking time to read Hannah’s story

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Freed Drew

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