Free Care Fund: 13-year-old Taylor planning her future after miracle recovery from rare condition at UPMC Children's Hospital
PITTSBURGH (KDKA) -- We're gearing up for the 69th Annual KDKA-TV Free Care Fund Telethon on Thursday, Dec. 8. The Free Care Fund at UPMC Children's Hospital of Pittsburgh ensures that no child is ever denied medical care.
This year's junior co-host is Taylor Roles. Her miracle recovery from a very rare condition is thanks to the doctors, nurses and therapists at UPMC Children's Hospital.
In the summer of 2020, Taylor Roles, of Aspinwall, was a happy, healthy, typical 11-year-old girl busy with cheerleading practice.
"It was really fun to be a cheerleader," Taylor said.
Until one morning, when she woke up with a low-grade fever. By the next day, she was feeling better but decided to stay home to rest.
"When her dad got home that afternoon, he couldn't wake her up," Kim Roles, Taylor's mother, said.
Taylor was unresponsive. She was rushed to UPMC Children's Hospital of Pittsburgh. When they got to the emergency room, Taylor had a grand mal seizure.
"The most terrifying thing I've ever seen in my life," Taylor's mom said.
Taylor was admitted to the ICU and after an EEG, doctors realized even though her body was not physically still seizing, her brain was.
"They induced a coma at that point to try to rest her brain and get the seizing to stop," Kim said.
For two months, Taylor remained in that medically induced coma.
All of it made even more difficult, because doctors still couldn't figure out what was wrong with her.
"They did every test multiple times; everything came back negative," Kim said.
After eight weeks, doctors decided it was time to try to bring Taylor out of the coma, but she would not wake up.
Another month passed.
"Every day was just worse than the next because she didn't wake up," Kim said.
Then came the discussion no one wants to have about any loved one, let alone their child -- end of life care.
"They didn't think she'd wake up," Kim said.
But Taylor's parents and her neurologist were not ready to give up just yet. So, in a last-ditch effort, doctors performed a procedure called Deep Brain Stimulation.
Shortly thereafter, a miracle! Taylor finally woke up from her coma.
Slowly, but surely, with another four months of intensive rehab, Taylor began to recover -- thanks, in large part her mom says to her therapists.
"You hear it when you're in the ICU. They tell you, 'Oh when you get to rehab, you know, it's a miracle place.' It truly is," Kim said. "When Taylor got there, she couldn't sit up, she couldn't eat, she couldn't hold her head up."
Four months later, her family said Taylor was able to walk and eat. After a total of seven months in the hospital, Taylor finally went home.
But the Roles family quickly learned, the journey was only beginning.
"We didn't know what tomorrow looked like and how she would recover, and every day we thought well this could be the best she ever is," Kim said. "A year and half later, she's rock climbing and in musicals, and I mean, she's just loving every day."
Taylor and her family know none of it would be possible without UPMC Children's Hospital.
"They genuinely care, and to have that kind of a facility in our backyard, we couldn't be more blessed," Kim said.
Taylor is now 13 and looking forward to her future. But, like most 13-year-olds, she hasn't yet pinned down exactly what she wants to do when she grows up.
"A veterinarian, an artist, or a teacher," Taylor said
However, her family is just grateful that she has a future to plan.
"She means everything. She's my best friend," Sara Yarnall, Taylor's sister, said.
"I don't think she was meant to wake up," Kim said. "The brain damage was severe and she fights through it every day."
But Taylor's still here to fight and that's what matters most.
By the way, doctors eventually determined Taylor had something called "FIRES," which stands for Febrile Infection-Related Epilepsy Syndrome. It's a very rare condition and affects approximately just one in a million children.
Taylor is alive today thanks to the care she received at UPMC Children's Hospital.
You can help make sure kids just like her get the care they need by donating to the Free Care Fund during our 69th Annual Telethon on Thursday, Dec. 8, from 4 until 8 p.m., right here on KDKA-TV.
