Meet Kalob, he is 17 years old and has been fighting a rare disease called Cystinosis since birth. We did not actually get his diagnosis until he turned 1 and was failing to thrive. We’ve known ever since then that he was in for a lifelong battle with this disease. He has been in and out of hospitals with multiple procedures his entire life. He is stronger and more resilient than any boy should ever have to be. He sees multiple doctors regularly, gets blood drawn often, and takes over 50 pills daily just to help fight this disease. While Cystinosis affects his entire body, it especially damages his kidneys. Unfortunately, we’ve arrived at the point that his kidneys aren’t functioning enough to keep up with his body’s needs and he is in stage 5 kidney failure. He has started dialysis and is working towards his transplant! 

There is no cure for Cystinosis or end-stage kidney disease, so this is something he will always battle. Our goal now is to get him back to his “normal” and feeling better. 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.