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Girl raises awareness of her kidney disease
Michael Christ. Daily Local News. Philadelphia, P.A.: July 2, 2006.
The recent Downingtown West High School graduate has rubbed elbows with U.S. senators and congressmen, and has even been mentioned in the same breath with professional basketball players, which is not an easy task for a girl who stands a mere 5 feet, 2 inches tall.
However, her meetings with government officials haven’t been to learn how the wheels turn in the nation’s capital, they’ve been to get them turning.
At age 7, Stewart, of Glenmoore, was diagnosed with focal segmental glomerulosclerosis, or FSGS, a syndrome that debilitates the kidney’s filtration process, and can lead to kidney failure.
"She would wake up and I would get her ready for school, and her eyes were puffy. She had ‘sleepy eyes,’" said Stewart’s father, Brad. "By the time she walked out the door for the bus, her sleepy eyes were gone."
One day, he said, her grandparents noticed her swollen eyes and legs, and felt something was wrong.
According to Melanie Stewart, she had gone to the doctor for strep throat in 1995, and her mother mentioned the puffy eyes.
A urine test that day showed signs of high protein levels, and the next day, she was in the nephrology unit of Children’s Hospital of Philadelphia.
"I was old enough to remember, but young enough not to know that anything was different," Stewart said.
But things were different.
By October 1997, the 10-year-old’s kidneys stopped functioning and she was put on peritoneal dialysis.
Two years later, in April 1999, Stewart received a kidney donated by her father, but instead of things getting better, the situation became much worse.
"It wasn’t very fun," she said. "The medical treatment I was getting was a lot of the same immunosuppressant drugs I was taking before that caused a puffy face, thinning hair, growing hair."
She had to receive 750 mg of IV prednisone injected three times a week, which caused her eyes to swell to the point where she could not open them. Then, Stewart developed post-transplant lymphoproliferative disease, a type of cancer that attacked her lymph system.
She almost died when she developed a blood infection and a clot formed in her heart caused by an apheresis catheter.
"I had a cancer bump on my head, a tube in my chest and it compromised my immune system," she said.
Stewart soon lost the kidney her father had given her, and she was forced to endure daily dialysis once again.
Throughout the struggle, however, Stewart has remained strong about her own situation, and unflagging in her quest to raise awareness of the condition.
"I can’t do anything about it, so I move on," she said. "I want to find a cause and a cure and one day have a kidney transplant without FSGS coming back, so others don’t have to go through what I went through."
Stewart is currently involved with the NephCure Foundation, based in Berwyn, of which Brad Stewart serves on the board of directors.
The nonprofit foundation was formed in 1999, and aims to find a cause and cure to Nephrotic Syndrome and FSGS.
Through the foundation, she has volunteered for several fundraisers including a beef-and-beer dinner and a Frisbee golf tournament.
She also serves on the Children’s Hospital Youth Advisory Council.
Still, between her three jobs and volunteer efforts, Stewart does six days a week of PD dialysis, along with one day of hemodialysis.
Coincidentally, it was during a dialysis treatment when she made a decision to attend West Chester University’s School of Nursing this fall.
It was there she befriended an administrator from the school, who convinced her to apply.
"I always talk to him, and he asked where I wanted to go and I told him West Chester," she said.
Should the nursing plan fall through, Stewart said she would be interested in political activism, an area she already knows a thing or two about, since she has testified before Congress several times.
As for the present, she is a normal 19-year-old, soon-to-be college freshman, who likes to hang with friends and listen to music.
"I don’t want to be treated differently," she said. "This is just one part of my life, not the whole entire thing."
Reproduced
with permission of the copyright owner.
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