Our Stories

Aubrey’s Story

Our daughter, Aubrey, was diagnosed with Focal Segmental Glumerulosclerosis (FSGS) on April 15, 2009 at the age of 8. 

In January of 2009 Aubrey’s pediatrician noticed that there was protein showing up in her urine.  Aubrey had been treated a few times that month for the flu and the norovirus and was being examined again to make sure she wasn’t dehydrated.  Aubrey’s pediatrician ordered blood work, 24-hour urinalysis, and an ultrasound.  The results from those tests didn’t explain why there was protein present in her urine so we were referred to a pediatric nephrologist at MCV.  In March of 2009, Aubrey had a kidney biopsy and then we received the diagnosis of FSGS. 

When we got the diagnosis we were in shock. We had never heard of this disease and we had no idea what the disease was or how our daughter would be affected.  All we knew was that our lives would never be the same.  We have no idea how Aubrey got this disease and as of today there is no cure. 

Since the diagnosis Aubrey has been treated with a few different medications.  She started taking prednisone (a nasty steroid) and ranitidine.  These medications caused her blood pressure to rise so she was put on enalapril to help lower it.  She then needed to be put on a Vitamin D supplement then prograf was added and we began to wean her off of the steroids.  The side effects from these medicines are awful and as a parent it is difficult to see how it changes your child both mentally and physically. 

Even though the last 2 ½ years have been difficult we are extremely lucky.  Aubrey has had a partial response to steroids and in October of 2009 the amount of protein in her urine had decreased to a level that is considered remission.  She continued to stay on medicine until June of 2011 and then we took her completely off of medication to see if she would remain in remission.  She was able to stay off medication for five weeks but her numbers started to climb back up so we had to put her back on medication. 

The day that Aubrey was diagnosed I thought that our world had ended.  I had no idea how to handle this or how to explain it to Aubrey.  The day after the diagnosis my husband searched online for FSGS and The NephCure Foundation came up in the search.  We were contacted immediately and ever since I have been actively involved in raising funds and awareness for NS and FSGS.  In the past two years there have been many exciting medical advances made and I know that with your help we can find a cure.  I am team leader in the state of Virginia and last year I helped plan the first walk for the area and I am in the process of planning our next walk.

Today, Aubrey, is 10 years old, in the 5^th grade, and is a happy girl.  She enjoys life to the fullest and doesn’t take it for granted.  She loves her brother, reading, math, and dancing.  She continues to amaze us every day.

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