Damian Varga was at his cousin’s bedside when she died of cystic fibrosis almost two years ago.
The 14-year-old from Arlington is also concerned about another cousin who recently moved from Arlington to Denver because a higher altitude is better for the lungs.
So it seems only natural that Varga was willing to go to Washington, D.C., last week, along with about 60 other teenagers from across the United States, to advocate for more awareness of cystic fibrosis, a fatal disease that affects the lungs and digestive system.
They met on Capitol Hill with lawmakers and urged them not to cut research funding from the National Institutes of Health and the Food and Drug Administration budgets.
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“I liked telling each one of them what we needed and why,” Varga said of his part in Teen Advocacy Day, sponsored by the Cystic Fibrosis Foundation. “I felt like I made a difference.”
Cystic fibrosis is an inherited chronic disease that affects about 30,000 children and adults in the United States and 70,000 worldwide, according to the foundation. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that can clog the lungs and lead to life-threatening infections.
The mucus can also obstruct the pancreas and stop natural enzymes from helping the body break down and absorb food.
Foundation officials say that about 1,000 new cases of cystic fibrosis are diagnosed a year, with more than 70 percent of the patients being diagnosed by age 2. More than 45 percent of the patient population is 18 or older; the predicted median age of survival is in the late 30s.
Medical advances have extended and improved the lives of those with the disease compared with 50 years ago, when few children with cystic fibrosis lived to attend elementary school.
The gene linked to cystic fibrosis was discovered in 1989 by an international research collaboration, according to the foundation’s website. With that discovery, researchers for the first time could make a healthy version of the gene for further study.
Varga visited six House members’ offices and met with Reps. Marc Veasey, a Democrat from Fort Worth, and Joe Barton, a Republican who represents parts of Arlington. Damian also met with newly elected Sen. Ed Markey, a Democrat from Massachusetts.
“The congressmen said they were surprised to see someone my age doing this. They listened and seemed appreciative of what I had to say,” Varga said.
Michelle Varga, who traveled with her son to Washington, said that besides urging Congress to keep research funding intact, they also hope that as the Affordable Health Care Act takes effect, insurance companies will continue to cover treatment at specialized care centers throughout the country.
Damian Varga does not have cystic fibrosis, but he has seen the devastating effects it can have.
His cousin Madison Dallas, underwent daily breathing treatments and therapy to keep phlegm from building up in her lungs. Dallas died in October 2011 when she was 14 and was beginning her freshman year at Nolan Catholic High School.
“Madison was my inspiration” for going to Washington, Damian said. “I was holding her hand when she died.”