Born with cystic fibrosis, Bryan Hoopengardner knew he might not live past 20. Meanwhile, he lived life to the fullest — making friends, playing sports, becoming an Eagle Scout, graduating from Centreville High and attending college.
BUT HIS disease has no cure, and his time ran out on March 31 — just 3 1/2 weeks after his 20th birthday. Last Tuesday, April 12, he was laid to rest in Arlington National Cemetery. And as far as his parents are concerned, it was only fitting that he be there among heroes.
"Heroes are the people who get up every day and do the best they can with the hand they've been dealt," said his father, Army Lt. Col. (Ret.) David Hoopengardner of Centre Ridge. "Bryan is one such hero. Just to go to school every day required Herculean efforts, but he never complained. He didn't want people to know he had CF, and he didn't want special treatment. He wanted to be normal."
The family moved to Centreville in 1992. Dad David's a contractor for Northrop Grumman; mom Joan's a pre-kindergarten aide at Centreville Day School. Bryan was a sophomore at GMU; brother Stephen, 18, is a Centreville High senior, and brother David Jr., 22, is in the Navy's flight school in Pensacola, Fla.
A genetic disease affecting some 30,000 children and adults in the U.S., cystic fibrosis is progressive and degenerative. It causes thick, lung-clogging mucus and affects all mucus-producing glands in the digestive, reproductive and respiratory systems. Bryan's CF began in his digestive system, but eventually affected his lungs.
"It's a recessive gene, and both parents have to carry it," said Joan. "Then there's 25 percent chance they'll have a child with CF." (See www.cff.org).
No one knew of anyone in David's or Joan's families who had CF. But unbeknownst to them, they both carried the gene. "We traced it," said David. "I got it from my father and she got it from her mother." Now, said Joan, "The family's aware that they could carry the gene."
A day after Bryan's birth in Atlanta, doctors operated and removed an intestinal blockage. A nurse said it could indicate CF, but Bryan tested negative so, said Joan, "They discharged him and told us not to worry."
Through research, she learned "CF people tend to have salty skin, and you could see salt crystals on Bryan's forehead. I kept telling pediatricians I thought he had CF, but they dismissed it."
When he was 3 1/2 months old, they visited Joan's parents in Fairfax and took Bryan to Walter Reed Army Medical Center for a different CF test. On Fourth of July weekend, the results were positive. Joan was relieved to have a diagnosis "so we could get going with treatment and therapy."
BACK IN Atlanta, tests showed Bryan lacked pancreatic enzymes to help him digest food. But once he got them in pill form with his baby bottles, he gained weight and grew stronger. He still needed lots of calories because he didn't digest all of his food; otherwise, things were fine.
"He ran, played, rode bikes, skied and sledded," said his mom. "He didn't really have any lung issues, early on," said his dad. From 1989-92, the family was stationed in Germany and, since the U.S. military didn't treat CF, Bryan went to a German kinder clinic.
"They were pro-active and started therapies to prevent possible respiratory problems," said Joan. "He took medicines and antibiotics and did children's gymnastics to develop his lungs. Bryan also swam and did breathing exercises and had three great years with no problems."
Settling in Centreville in 1992, when Bryan was 7, his parents took him to the CF clinic at Bethesda Naval Hospital and got doctors there to continue the treatment he'd received in Germany. About that time, the gene causing CF was discovered," said David. Added Joan: "They thought finding it would solve all the problems, but it didn't."
Bryan's CF flared up again when he was 10 and a fourth-grader at Centre Ridge Elementary. "His lungs were getting congested, so he got antibiotics intravenously for three weeks and then was fine," said his mom. "He was back playing basketball and baseball."
Although shy and quiet, he loved sports. His grandmother taught him to putt into a plastic bucket at age 3. And in T-Ball, said his dad, "He'd make triple plays when nobody else had a clue about what was happening on the field."
Bryan played SYA soccer and flag football and then SYA baseball (second base) into high school. "His last year in SYA, his Little League team, the Mariners, was undefeated in the regular season," said David. So was Bryan's freshman football team at Centreville under head coach Donnie Warren.
"That was hard for him, because it was when his CF kicked in, so his lung capacity wasn't as good as other kids'," said Joan. "That was the last year he played organized sports for the high school." But in his sophomore, junior and senior years, he played SYA basketball.
"He was a guard and a very good, three-point shooter," said his proud dad. But, said his mom, "He couldn't play more than a quarter at a time without resting."
Winter was hard for Bryan — "a combination of weather, germs and being indoors and less active," explained Joan. "Before he went to school, he did 45 minutes of chest therapy to unblock his lungs, and he did it again after school and at bedtime."
The end of Bryan's sophomore year at Centreville, he was hospitalized with pneumonia caused by his CF. "It was his first really bad episode," said his mom. "He was at Walter Reed, all of June, receiving intravenous therapies. He'd lost about half of his lung function by that time."
STILL, HE attended Boy Scout summer camps and national jamborees, earned Eagle Scout rank and went coral-reef sailing in the Florida Keys. "He didn't want other kids to know about his disease," said Joan. "He didn't want to be different." Bryan worked out at Life Time Fitness and, said David, "We were regular golfing partners at Twin Lakes. It got him walking."
Majoring in sports marketing at GMU, he loved his classes and found his niche. But five weeks from finishing his sophomore year, his energy began failing and he developed bronchial pneumonia. Although he rallied for awhile, it was the beginning of the end. A lung collapsed, he needed oxygen and he was placed on a ventilator in the hospital.
Although Bryan had fought hard against his CF, on March 28, he went into cardiac arrest, causing irreversible brain damage from lack of oxygen. Friends and family gathered round, held his hand and said goodbye. Three days later, doctors turned off the ventilator and he died.
"I had my hand on his cheek and laid my head on his chest," said his mother. "I told him it was OK — it was time. Afterward, we were the walking wounded — in a total dazed state."
"I was hoping he'd beat the statistics," said his dad. "We figured he'd get to grow up, go to college, get a job, marry — whatever. We didn't dwell on [his disease]." Added Joan: "He did more things than many people do in a lifetime. We made every moment count."
Family, friends, teachers and professors jammed a service celebrating Bryan's life, April 6, at Centreville United Methodist Church, plus his funeral at Arlington. Friends Matt Claytor and Chris Ro knew Bryan since elementary school. "He was one of the funniest guys you could ever meet," said Claytor. "He always had a joke and would get us laughing hysterically," said Ro. They played sports, video games and Texas Hold 'Em poker together. Said Claytor: "I knew about his disease, but never really thought about him dying one day."
Bryan's Troop 893 Boy Scout leader, Dan Palenscar recalled wondering how such a "skinny, little kid" could go camping. "But he had the endurance to hang in there and do what it took, and it said a lot about his gumption and guts," said Palenscar. "I feel bad for his family; they'll carry this pain forever."
Friend Jamey Brice, 20, said Bryan never missed church or football practice: "It was like he was trying to keep going, no matter what. Bryan was a silent hero to his friends, not allowing his illness to stand in the way of his goals and accomplishments. He was an inspiration to others."
Retired Army chaplain Lindsay Arnold said Bryan "knew exactly what the score was with him and was a great kid. The legacy he left was cheerfulness and strength in adversity. It's not how he died; the real issue is how he lived."