Raegan “Rae” Rosencrans takes between 15 and 22 pills a day.
The medications help the 2-year-old’s body digest food, said Rae’s mother Jill Brown, allowing her to eat between percussion therapy and nebulizer treatment sessions for her breathing.
Rae is one of approximately 30,000 Americans living with cystic fibrosis, a genetic disease that, according to the Cystic Fibrosis Foundation, primarily affects the digestive and respiratory systems.
Her supporters will hold a “Day for Rae” July 5 at the Idetown Volunteer Fire Department. Beginning at 11 a.m., the event runs until 9 p.m. and will feature a motorcycle run, as well as several live music acts, food, prizes and beer served after 1 p.m. Admission of $25 per adult and $10 per child aged 5-12 will be collected at the door. All proceeds will benefit the Cystic Fibrosis Foundation.
Top Gunners LE MC, a motorcycle club comprised of 51 percent law enforcement officers, will organize and hold registration for the ride from 11 a.m. to noon. Registration costs $25 for riders and $15 for passengers, and includes admission to the benefit.
“Her biggest problem right now is that she can’t gain weight,” said Brown, 30, Trucksville.
Last year, she said, the inability landed Rae in the hospital for two weeks when her weight dipped dangerously low.
Brown said the scare had doctors considering a feeding tube for the toddler, but after three months, her weight rose to acceptable levels.
“So that’s out of the picture for right now,” Brown said.
People often ask about her daughter’s long-term prognosis, she said, but with so much uncertainty inherent to cystic fibrosis, a reliable one doesn’t exist.
Rae is prescribed six different medications, and often takes antibiotics because her weak immune system has trouble fighting colds and infections, her mother said.
“The medication never goes away,” Brown said. “It just increases.”
She said trips to out-of-town hospitals are frequent, and often yield heartbreaking results.
“They don’t sugar coat it,” Brown said. And though she said she appreciates the approach, she added it “sometimes can leave you in tears.”
But Brown said she remains hopeful that research and advances, funded in no small way by the Cystic Fibrosis Foundation, will continue to improve the quality of life for her daughter, and some day might even lead to a cure.
To learn more about cystic fibrosis or the Cystic Fibrosis Foundation, visit www.cff.org.
For more information about the July 5 benefit, check out the event’s Facebook page titled “A Day For Rae” sponsored by Luzerne County Dispatch.