janet
so this is a life long illness? I have a daughter who is 9 years old and this disease is affecting my daughter's kidneys.she loses her blood cells constantly , also my daughter is in ecuador and I live in NY . and the doctor wants to know if we should do a biopsy I think it's called , where they take a piece of her kidney out to see how to go against the disease.thank u , someone please reply with whatever information u can , ciao