Could you even imagine holding your newborn baby in your arms and knowing that your baby will struggle for each breath until the day she dies? Amidst the good moments, her life will also be filled with the anguish of oxygen tanks, countless pills, long-term hospital stays, sleepless nights, puffers, emergencies, poor growth and weight gain, failing organs, confining diets and disapproving glares in grocery aisles as your child coughs and hacks away.
Welcome to Cystic Fibrosis — a fatal genetic disease that causes mucus to build up and clog some of the organs in the body, often the lungs and pancreas. Once the lungs fill with the thick mucous, breathing becomes a challenge. Mucous also traps bacteria in the airway resulting in damaging inflammation and infections. Though in 1955 kids with CF didn’t live past grammar school, as of 2009, the median predicted age is mid-30s. Since only 30,000 children and adults in the United States have CF, the government does not invest in exploring alternate treatments or cures, placing the onus upon the shoulders of the heavily burdened family members and loved ones.
Kingston residents Jen and Dana Blackmon have been carrying the burden of CF since March 2006 with the birth of their daughter, Dayna Jenae. During routine newborn genetic screening, Dayna turned up positive for the chromosomal predisposition, and the diagnosis was handed down within two weeks from the Pediatric Pulmonary and Cystic Fibrosis Center at Albany Medical Center, confirmed by a sweat test.
“We were told about the challenges of raising a child with CF,” explained Dana. “These include but aren’t limited to the risk of her getting colds, which can lead to lung infections; Dayna’s need to take pancreatic enzymes with any food she eats that has fat or protein so she can digest her food; her need to take additional vitamins and supplements to support her health; the need to do chest percussion therapy, where we pound her back and lungs everyday to break up the mucus in her lungs; the need to take antibiotics if her throat cultures show bacteria that could potentially develop into infections. We were told that CF is a progressive disease that damages the lungs over time. That repeated lung infections cause lung damage and ultimately lung failure. We were told the average life expectancy was in the mid –thirties.”
Dana added that the couple was advised that medical advances were occurring regularly and if they followed the best practices for CF that Dayna could live a “full and happy life,” exactly what every parent wants to hear. “Being told your newborn child has a life-threatening disease, gives you a feeling of dread, like the floor has fallen from you with no end in sight,” said Dana. “It’s hard to describe unless it’s happened to you.”
Dana, an Ulster County assistant district attorney and private-practice attorney, attends every one of Dayna’s doctor appointments with a social worker. Dayna’s two-and-a-half-year-old little sister Melody does not have the disease. But she tests positive as a carrier, meaning she will have some hard decisions ahead of her, someday.
Dayna is now approaching first grade, and is reported to have a rather precocious and outgoing personality. Despite her breathing challenges, she still plays soccer and T-ball and swims. “But we always make sure she gets her treatments done,” said Jen. “Getting your kid out of bed to go to school on time is normally hard enough; Dayna needs to get up and take numerous medications so she can eat, do her breathing treatment and sometimes her [vibrating] vest all before leaving for school.
“Dayna wears a vibrating vest now which has replaced mom and dad pounding on her back. This shortens the amount of time she needs to do her treatments some, but that is still time she’d rather be outside playing.”
The sands run
“We started doing fundraising for CF because we felt like we can’t sit back and wait for a cure,” explained Jen. “We have to do whatever we can to make it happen sooner rather than later. We were introduced to many local families who have children with CF and realized we weren’t alone. Our main goals are to raise awareness and money for the CF Foundation which funds the research to bring new medications to CF patients.” To that end, for five years the Blackmons have been holding “Benefit Monday” at Mariner’s Harbor inKingston, with the next one scheduled for Aug. 13 between 5:30-9 p.m. during which people can enjoy food, music, raffle prizes all benefiting cystic fibrosis, with every dollar raised goes directly to the CF Foundation.