Ellie started swelling on and off when she was 18 months old. She was then diagnosed with Nephrotic Syndrome at 22 months and biopsied six months later, the results of which showed FSGS. The first two years after her diagnoses were the most difficult. Ellie had gone though five plural effusions, 12 hospitalizations (the shortest 48 hours, the longest 30 days), one renal biopsy, central line placement and removal, countless albumin/lasix treatments (upwards close to 200 but who really counts anyway!!), a portra-cath placed and basically living at the hospital and in the cancer infusion center for months on end. Ellie is now almost five years old and a year into remission, thanks to extraordinary efforts from her Nephrologist and medical team. She will be starting Kindergarten in the Fall, she loves to play with her younger sister, swim like a fish, run like the wind during soccer and embrace life to the fullest.

One of the most difficult things about her diagnosis was the lack of understanding and support for this…this…I don’t really know what to call it. It is not just an illness, it is a turning point in everyday people’s lives. It changes everything for everyone it touches. We are now so thankful to the NephCure Foundation for their continued support to help find a cure.