Nephrotic What? - carnoldphoto

Nephrotic What?

This is a multi-part series into our daily life to bring awareness to FSGS and what its like living with this disease.

She was born on the 24th day of the second month in the year 2011.  The 24th is a special day because it is the same day her father and his brother, her uncle were born on.  Though they born in March and September respectively.  She is the first grandchild, and when she came into the world, we knew our lives would change, we just didn't know how much.

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It was a September day in 2013 after spending the summer together we got a call from her mother saying she was coming to get her and take her back to Birmingham.  Shocked at this sudden change of plans, I decided to spend these last hours with our granddaughter Saniyah doing whatever she wanted to do.  She decided that we would walk around the neighborhood and explore the world through the eyes of a two year old. “What’s that PaPa?” “See the leaf.” “Pick it up and touch it” she said as we watched the caterpillar make its way up the tree. As we approached the street corner, she sat down in a random driveway and called me to join her. “Lay down PaPa. Lets look at the clouds.” That was the last memory I have of being with a healthy day Saniyah.


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Three weeks later, we received a call that she was in Children’s Hospital at UAB. Her eyes swollen shut and rosey cheeks even puffier. Fluid filled her body and private parts so bad, she could no longer walk. She was on dialysis three times per week with each session lasting between 4-6 hours.  How did this happen? What triggered this? Is it hereditary? Will she make it through this? A million questions raced through my mind and the only thing we knew was Saniyah was suffering from kidney failure. Not just kidney failure, but end stage renal failure-our hearts sank. My mind kept going back to the last time we spent together and I wondered if that was to be the last time that I saw her since she was in Alabama and we were in Maryland. While we waited for information and updates to come in, I began to research childrens kidney diseases and gathering as much information as I could. We found out that she had Nephrotic Syndrome cause by Focal Segmental Glomerulosclerosis or FSGS as its commonly called.  This was the beginning of a journey into an unknown world where there is no such thing as normal.


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