THE NEPHROTIC SYNDROME FOUNDATION: WE HOPE

by The Nephrotic Syndrome Foundation

Lindsey Wallace

Raygon, 4, was diagnosed at 3 years old with MC Nephrotic Syndrome. We had taken him to Disney World the week prior for vacation. It was a magical trip!
The week following he became ill with RSV and Flu A. He woke up and his face was swollen.
When we arrived at the hospital it was terrible. They almost let us go home without even realizing he was swollen. They thought that’s how he always looked. The ER doctor thought his test had an incorrect reading until we stopped her and told her he was in fact very swollen. We had a 6 night hospital stay only to be released 5 days before Christmas in 2019. Since, he has had 4 relapses and another hospital stay within 14 months. The Nephrotic Syndrome Foundation is an organization that brings joy to the children’s battling this awful illness. The medicines that get pumped through their bodies is more than anyone should have to go through. They didn’t ask for this, but they don’t have to battle it alone.

Our Mission: The Nephrotic Syndrome Foundation is a non-profit organization supporting those diagnosed with Nephrotic Syndrome, their families and the ongoing search for a cure.

Background: Nephrotic Syndrome is a serious and rare auto-immune disease that attacks the kidneys causing them to shut down. There is no known cause or cure. Treatments are extremely limited and consist primarily of steroids, cancer, and transplant medications. Many patients are children who spend a major part of their life in and out of the hospital, trying to find a treatment that keeps them in remission while managing the side effects. Receiving this diagnosis is life-changing. It can take the breath out of any parent or child who finds themselves in this situation. Our goal at NSF is to meet each family and child in these tough times and lift each one up as best we can by providing financial and emotional support to help them weather the times to better health, acceptance, and adjustment.