After local girl travels for life saving appointment, families try to raise awareness about cystic fibrosis
Thu, 22 Mar 2012 21:48:58 GMT —
We're following up with 12-year-old Bryona Wiler, after she received a flight to Pittsburgh for a potentially life saving doctor appointment.
Patient Airlift Services, an organization out of Long Island, NY, found a pilot to help Bryona after her travel plans fell through. She needed to make it to Pittsburgh Thursday for an evaluation that could get her on the list for a double lung transplant.
Bryona's mother, Alicia, says Bryona went through about seven hours of tests on Thursday and is expected to go through about two more hours of tests on Friday before going home to Union Springs. On Tuesday, doctors will meet to discuss Bryona's eligibility for a double lung transplant.
Bryona's story is encouraging other local families affected by cystic fibrosis to speak out in an attempt to raise awareness about the disease.
Angelina Morgan, who lives in Aurora, says she has had cystic fibrosis her whole life. When she was born, doctors told her parents she would only live about five years. She's turning 32 next week. Morgan received a lung transplant five years ago, but she says the disease has still taken a toll on her and her daughter Robyn Leigh.
"S he had to go through the first three years of her life seeing Mommy not be able to play with her," says Morgan. "I couldn't take her to the park. We couldn't do anything. I couldn't breathe. I was on five liters of oxygen, all the time."
Morgan says even with the transplant, she still takes about thirty pills each day and has to have regular doctor appointments. She's hoping researchers will find a cure soon.
Dr. Ran Anbar, the director of the Cystic Fibrosis Program at Upstate Golisano Children's Hospital in Syracuse, says there is hope for cystic fibrosis patients.
"T hings are changing a great deal with cystic fibrosis ," says Anbar . "When I first started working with patients who had this illness, the average age of patients, they would live to about 18 years of age. Now the average is about 38 years of age, and we're coming up with a cure for this disease, I believe, in the next few years."
Anbar says about 200 people have cystic fibrosis in Central New York, and about 30,000 people have it in the United States.