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Benefit to support Bay Area girl with kidney disease
Kylie Jones reports.
PALM HARBOR, Fla. - A 12-year-old girl in Pinellas County battling a very rare kidney disease was released from the hospital Tuesday.
Natalie Warner was diagnosed with focal segmental glomerulosclerosis, or FSGS, and it can cause kidney failure in patients.
Warner had both kidneys removed in February and was released from the hospital. Three days later, she started having seizures and other complications, so she was readmitted to the hospital.
"She had seizures. Then there were blood pressure complications and a lot of other things, so I didn’t know," Natalie’s father David Warner said. "The doctors couldn’t give us a date, so there was no, ‘Hey, here’s the finish line, we’ve got to get to here and then we finally get to go’. It just was day by day."
Natalie Warner inside Johns Hopkins All Children's Hospital.
When Natalie started having complications, the transplant process had to be put on hold. Natalie’s parents say they can finally start the process again to get her on the transplant list at Tampa General Hospital.
"I’ve been waiting for this moment a long time," Natalie’s mother Rosalinda Pedrosa said.
Her release on Tuesday marked a milestone that her family had been looking forward to for a month.
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"It gave me goosebumps finally getting out," David Warner said. "I didn’t know when this day was going to come."
Natalie Warner leaving the hospital after a month.
On Tuesday, the community came together to hold a benefit event to support Natalie’s long journey ahead. The event was held at Rare Accents Salon in Palm Harbor.
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"To see her smiling and see how good she looked and just the smile on her face," Ranee Cramer, a close family friend, said. "If it doesn’t bring tears to your eyes, I don’t what else to say."
Natalie’s parents say she was diagnosed with FSGS in 2022. She is one of the 40,000 patients in the U.S. currently living with the disease.
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Rare kidney disease hits daughter 20 years after father
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.
Her father, David Warner, was also diagnosed with focal segmental glomerulosclerosis when he was younger and received a transplant 15 years ago.
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"It was amazing for me when I got it, and I just want her to get back to normal again, and being a kid and being able to play softball," he said.
Natalie Warner had to have both kidneys removed due to a rare disease.
In 2022, Tampa General Hospital says it ranked third in the nation, doing more than 400 kidney transplants, in addition to other organ transplants.
"At this time, there are more than 100,000 patients waiting across the country on the waitlist for a transplant, more than 90% of whom are waiting for a kidney transplant," Dr. Rajendra Baliga, said.
Natalie Warner loves playing softball.
Dr. Baliga says they’re one of the largest transplant centers in the country, and one of the largest pediatric transplant centers in Florida.
"Living donor transplants typically have no wait time. We can do it as soon as the donor has been worked up," Dr. Baliga said.
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He says Tampa General Hospital has the largest living donor program in Florida.
Natalie Warner is an active 12-year-old girl who would rather be on a softball field than in the hospital.
"It’s overwhelming, but you just keep going, because if, as parents, we’re not positive, the kids won’t be positive," Pedrosa said.
Family, friends and the community came together Tuesday night to raise thousands of dollars to support Natalie.
"She’s such a happy kid and she’s got a long road ahead of her, but she’s a fighter. Just like her dad was," Cramer said.
Natalie Warner gets her hair washed during a benefit for her family.
Natalie’s parents say they hope to get her on the transplant list at Tampa General Hospital as soon as possible, and are hopeful to find a living donor who is a match.
"Living donation is the best, especially for younger patients and definitely for pediatric patients, because like I said, those kidneys tend to work right away and they do tend to last longer," Dr. Baliga said. "It can significantly increase the lifespan of patients, especially pediatric patients."
Dr. Baliga says the wait time for a kidney transplant is shorter in Florida than many other wait times around the country.