Patient Story

Cody's Story

My name is Cody Gleeson and I am three years old.  I live in Upstate New York with my parents, my twin brother Ben, and my dog, Ada.  I have a ton of family members and friends that love my family and I very much.  I wanted to share my story to help fund research for a rare disease that I have. 

At the end of November and early December of 2010 my parents started to notice that I was puffy around my eyes at certain times.  I went to the pediatrician a few times and we left believing it was due to an allergy of some sort.  This is usually the first wrong diagnosis for a rare kidney disease I have called Minimal Change Disease, which is a form of Nephrotic Syndrome.

On December 6, 2010 I was brought to the emergency room because my parents noticed I was puffy around my eyes and my stomach was a little distended.  I was diagnosed with Nephrotic Syndrome.  After that I began taking medications in hopes that would help my disease go into remission.  My doctor was hoping that I would have Minimal Change Disease since there is a chance I can outgrow this.

I didn’t respond to the medications that most people with Minimal Change Disease do, so on January 12, 2011 I had a kidney biopsy.  The biopsy was benign which is consistent with Minimal Change Disease, but I am still showing all the signs and symptoms of Focal Segmental Glomerulosclerosis (FSGS).  Since biopsies are not definitive I am being treated as an FSGS patient, this greatly reduces my chances of ever outgrowing this because it is more likely that I have FSGS rather than Minimal Change Disease.

Since then I have been to Children’s Hospital Boston and I am continuing to be treated by a Nephrologist in my area.  My doctor has found a medication that helps, but all medications for this disease have harsh long term side effects.  FSGS is very hard to treat because there is no known cause or cure.  That is why I have decided to make a difference and try to raise funds for the research of Nephrotic Syndrome and FSGS.

The NephCure Foundation is the only organization solely committed to seek a cause and cure for FSGS and Nephrotic Syndrome.  They have been very active by continuing to generate awareness, facilitate free patient education seminars, and support several research initiatives.  My family supports its efforts because of the organization’s association with renowned scientists from around the world and because of its dedication to fundraising for research.

Every year, patients are diagnosed with FSGS, which is the second leading cause of kidney failure in children. Treatment is trial and error.  Most commonly patients are treated with steroid regimens and anti-rejection drugs, most of which have very harsh side effects.

Nephcure was founded by parents like mine to make more noise about FSGS and Nephrotic Syndrome and to raise money to support research. Please consider a donation in honor of me. NephCure funds research to find the cause, better treatment and a cure. Your donation will be put to good use. NephCure operates efficiently to maximize the effectiveness of your contribution.