Immune System Disorder
Riley Hospital for Children
Few people have faced odds like 8-year-old Ramonie. At 20 months old, she was diagnosed with focal segmental glomerulosclerosis (FSGS), a rare immune system disorder with no known cause or cure. The disorder leads to protein loss that, if not controlled, could lead to kidney failure. Despite multiple hospitalizations at Riley Hospital for Children, a home nurse and medications, Ramonie's body became susceptible to infections, fluid retention and dangerous protein loss.
At age 3, Ramonie went into kidney failure. For the next two years she was kept alive with dialysis eight hours a day, seven days a week until a kidney donor was found, and she underwent a successful transplant.
But with FSGS, there's a 30 percent chance the disease would reoccur. With Ramonie, it returned in just three days. She began aggressive aphresis treatments that cycled her blood through a machine to be replaced with donated blood. Doctors knew that if treatment wasn't successful, the transplanted kidney could be lost and subsequent transplants would have an even lower chance for success.
That's when Ramonie beat the odds. She recovered and today she has no medical or physical restrictions. At long last, Ramonie can live each day to the fullest as she's long waited to do.