'She's just everything.' Family struggles as 4-year-old is diagnosed with rare illness
A Connecticut family is grappling with their 4-year-old's rare diagnosis that has left her in a medically induced coma for 65 days at Yale New Haven Health Pediatric ICU.
Steve and Jill Rudolf's seemingly healthy granddaughter Talia Rudolf had been running fevers for three or four days.
"While she was at the emergency room is when she had her first major seizure. It was very severe seizure, so they immediately had to put her on a ventilator," said Steve Rudolf.
Talia Rudolf has been in the hospital in a medically induced coma for the last two months.
"I have not had a good night's sleep in 65 days, and I'm sure I wont until Talia is back home with us," he said.
After endless tests and screenings, doctors diagnosed her with febrile infection related epilepsy syndrome, or FIRES.
"She is one of only I believe 78 people in the entire world to be diagnosed with this. The doctors have very little information to work from in the way of treating it," said Steve Rudolf.
Talia's mother has been living at the hospital with her daughter while her father goes back and forth taking care of their other daughter.
"It's really quite traumatic for not only for my kids, but the entire family," said Steve Rudolf. "There's doctors and friends from around the world, working on Talia's case."
As the family takes it day by day hoping for the best, they are saddled with bills as they work to learn more about the rare diagnosis.
"She's just everything. You know? She's just a 4-year-old loving little child. No baby, no child should have to suffer like this," said Steve Rudolf.
To donate to Talia Rudolf's GoFundMe, click here.