Hayley Starts Letters for Life Campaign

Hi! I’m Hayley McDermott, I’m 12 years old, and I was diagnosed with FSGS this year. FSGS is an autoimmune kidney disease in which my kidney filters get scarred and large amounts of protein leak through. My body needs this protein to stay healthy.

Doctors were suspicious during my annual check-up in November 2007 when they found large amounts of protein in my urine. The next few months after that I had blood work done, an ultrasound and then a kidney biopsy at Hasbro’s Children’s Hospital in Providence, RI.

Two weeks after I recovered from the biopsy, they had the results. When I was told I had FSGS and what it was about I was scared and shocked. What shocked me the most was that I was going to have my kidney disease for the rest of my life because no doctor or scientist knows what causes FSGS or what can cure it. All I can do it hope the treatment works so I don’t need dialysis or a kidney transplant. And, if I do, the disease will attack my new kidney. This could happen to me many times during my lifetime. I am currently taking Prograf, an immunosuppressant, and Lisinopril, to lower my blood pressure. I take seven pills a day, and this is just the beginning. So far, it’s helping just a little. My doctor now wants to put me on steroids, but we’re trying to hold off a few more months to see if I get better. He says because we caught the disease early we probably have time. I have to live with a salt-restricted diet, and I really miss eating pickles, olives and feta cheese! I love salty foods! Right now my cholesterol levels are good and I don’t swell up often. I try to eat the very best foods and think positively about my health.

Many children and adults have FSGS and do not like what they have to go through. So, members of the NephCure Foundation are seeking a cure. To learn about NephCure, please visit www.nephcure.org. Please consider donating to the NephCure Foundation on my behalf so scientists and doctors have the resources to find a cure. I’m not giving up until they find a cure! Thank you so much for all your time and support.

Hayley