Kylie C.

Child, Nephrotic Syndrome

The ups, downs, and scares of having a kid with NS! My 6-year-old was diagnosed in April of 2016 with Nephrotic Syndrome. It was a life-changing day for us! We had NEVER heard of NS before. We went from having a healthy child with some allergies to having a child with a rare kidney disorder neither me nor my husband had ever heard of. We were afraid to take her home from the hospital! It was okay, because she stayed in the hospital for about three weeks.

When we did get home it was a total shock! What do we feed her, what about school, what about our jobs, what will happen in the future, will her kidneys fail, what do I feed her, how do I prevent this? We were in a whirlwind. We found the Nephrotic Syndrome site and other resources, and we take things one day at a time. We have had relapses, we have had ups and downs, but we live each day to the fullest!

Kylie is currently a 6-year-old kindergartner in an advanced reading class, takes tap, ballet, and jazz dance classes, and is on a competition dance team. She takes dance lessons three times a week. She loves it! Her first year petite team has won a number of awards, and they are a wonderful support system for her. No matter what comes, we will continue to take things one day at a time and let her be as normal as possible. That smile is priceless!

Live life to the fullest and cherish each day. This is a new lifestyle change for the ENTIRE family, not just your child.