Latest News

Giving Thanks for Friendship

My name is Kelly and this is my story about my unexpected and irreplaceable friendship with Alisan. If you love a story about overcoming difficulty, please let me tell you about how our family's incredible struggle with kidney disease led me to one of the most amazing women I've ever known.

Alisan and I live on opposite sides of the country - I'm in the jagged peaks of Colorado Springs, Alisan in sunny Atlanta. We live separate lives. It is unlikely we would ever have met, except that our lives were rocked in 2010 by four devastating letters - FSGS.

My daughter, Macy, and Alisan's two sons, Zion and Donovan, were diagnosed with the debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS).  Both Nephrotic Syndrome and FSGS cause irreparable damage to the kidneys - there is no known cause or cure, and treatments are severe and demanding.

FSGS is all-consuming. Our home is filled with medical supplies. We are in the hospital almost half of the time: our finances drained, our time consumed with labs, infusions, doctor appointments, therapy, etc.   Life as we knew it pre-FSGS will never exist again.  

I found NephCure about five months after Macy was diagnosed.  It was the first time I was able to meet others suffering from this disease. I immediately signed up for NephSpace and it was com