Kara was around two and a half years old when she was diagnosed with Nephrotic Syndrome. At first we were told she had Minimal Change Disease and would hopefully outgrow it, but soon a kidney biopsy would show it was FSGS. No medications were working to help her stop spilling protein. She had almost constant edema and low energy. She felt terrible and the medication’s side effects were just as bad as the disease. We stopped the medication and just started replacing her albumin at home. It was hard at first, but once we got into a routine things started to feel somewhat normal again.
We did this for nearly two years until Kara’s kidneys failed and she received a kidney transplant in March of 2016. Her FSGS came back within 24 hours and started attacking her new kidney. We tried plasmapheresis and medications, but when that failed we traveled to Delaware to start a new treatment called lipidpheresis. It worked, and Kara has been in remission for almost a year.
She has grown so much and has a ton of energy. She has become a star athlete and even earned a spot in the youth cross country nationals race, placing in the top 10 for her age group. She is so full of life and energy now. Her goal is to find ways to help raise money for NephCure so that more kids can be helped. Last summer she and her brother did a running fundraiser they called “Miles for NephCure.” Kara ran 25 miles and her big brother ran 50! This year they plan to start a 5k in the area to support NephCure!