- Posted February 5, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
A Kidney for Drew
I have a wonderful, smart ten-year-old granddaughter who is in need of a kidney transplant. My granddaughter, Drew Taylor, is suffering from a very rare disease called Alport’s Syndrome, which causes hearing loss and kidney failure, along with eye problems. This genetic disease was named for Dr. Alport, who first diagnosed it in 1927 in a family with several members suffering from deafness and kidney failure.
Drew first began showing symptoms at age five, when she was having repeated urinary tract infections, unusual for a small child. One day she said, “Mommy, I’m peeing red.” She was taken to her pediatrician, who discovered there was blood in her urine. At age six, several tests were run and she was diagnosed with Alport’s Syndrome. At that point her hearing began to steadily decline, and within a year, her hearing had deteriorated so much that she needed hearing aids.
Had her disease followed the normal progression, her kidney failure would not have occurred until early twenties or later. However, in the summer of 2013 her kidney function began to spiral downward. On December 3, she was taken to the emergency room with severe high blood pressure and chest pain, all of which signified that her kidneys were failing. At this point, she is too weak to complete full school days, and is therefore attending school only half-days. Her body is retaining fluids and she tires very easily.
Drew has now been referred to a kidney transplant team, and we are actively searching for a live kidney donor for her. She is expected to be in end-stage renal failure by this summer, and will need to begin dialysis if a kidney donor match has not been found.
Many people don’t realize that it’s possible to donate one of their kidneys to save a life. If you have type “O” blood and would like to be considered for kidney donation, please call (317)944-4370, ask for Kelly, and tell her you would like to donate a kidney to Drew Taylor. She will ask several questions to ascertain whether you might be a possible match.