BALTIMORE (WJZ) — Right now, there are 30,000 people in the United States living with cystic fibrosis.
Cystic fibrosis is a genetic life-shortening disease that makes its sufferers feel like they’re breathing through a straw.
Kasey Rafensperger, a Maryland woman who was diagnosed with cystic fibrosis, has 11 doctors- including Johns Hopkins cystic fibrosis specialist Christian Merlo.
Merlo saw Rafensperger’s disease nearly kill her and urged her to get a double lung transplant.
The transplant worked, and now, Rufensperger takes 40 pills — $5,000 worth of medicine — every day.
“I’m here because of [Merlo],” Rufensperger said.
Rafensperger was diagnosed with cystic fibrosis when she was five. Steadily, her organs became less efficient.
Three years ago, her lungs were ready to give out. By the time she agreed to a transplant, she almost cut it too close.
“Right before we got the call for transplant my family kind of started to come into town to see me, it was time,” Rafensperger said. “By the time I came in to get the lungs that I have now, I had 48 hours left.”
Rafensperger said she shares her intimate story because of a festival being held this weekend. It’s a fundraiser event where the money goes to research for cystic fibrosis.
“I’m very, very lucky,” Rafensperger said. “The only way to raise money is to tell your story. That’s why I’m here telling my story so we can raise money so we can get a cure.”
Organizers hope this year’s “Feastival” will raise $100,000. The fundraiser is at the Sandlot on the water downtown on Saturday from noon until 4 p.m. Tickets are $100 for one, $175 for two and all proceeds go to cystic fibrosis research.