Pinellas County girl fighting same rare kidney disease her father survived 20 years ago
CLEARWATER, Fla. - A Pinellas County 12-year-old is fighting a rare kidney disease that affects seven in 1 million people 20 years after her father survived the same illness.
The disease is called focal segmental glomerulosclerosis, or FSGS, and it can cause kidney failure in patients. Natalie Warner is one of the 40,000 patients in the U.S. currently living with the disease.
"I had a good day today," she told FOX 13 in an interview from her hospital bed recorded by her family. "I have my family and friends and the whole world supporting me."
Natalie's kidneys were removed in February, six months after her diagnosis, and she continues to receive treatments. In early March, her condition improved enough that she was allowed to return home to a homecoming celebration.
Days later, however, she was back in the hospital again with seizures caused by spikes in her blood pressure.
"She's way stronger than me at 12 years old, I can tell you that," said David Warner, Natalie's father.
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David Warner knows the kind of strength it takes to fight this disease. His battle made headlines in the early 2000s when he was a pitcher at Clearwater High School.
"When I was going through this, I had the mind mentality of, 'Okay, what do I got to do? How do I beat this?'" he told FOX 13. "Being a parent, though, it has been very scary."
Natalie isn't quite ready to go on the organ donor waiting list. Her father said her blood pressure needs to stabilize before that happens. When she is, her dad worries about long delays finding a donor.
That's something the Biden Administration announced Wednesday it wants to address by overhauling the nation's organ transplant system, which has been maintained by one agency for decades.
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"Anything to expedite this process I would be 100 percent for," David Warner said, adding what he's focused on right now is spreading awareness, "and hopefully finding a cure one day for it, not only for us, but for hundreds or thousands of other people that are going through the same thing."
Rare Accents Salon in Palm Harbor is holding a benefit for Natalie on Tuesday, April 4 from 5-8 p.m. All proceeds from haircuts given during that time will be donated to Natalie's fight.
Natalie’s family has also started an online fundraiser for her medical expenses, which her father said might not be covered by insurance.