Cystic Fibrosis Foundation benefit tonight to help those struggling with the illness

Cystic Fibrosis Foundation benefit tonight to help those struggling with the illness

October 27th, 2011 by Holly Leber in Life Entertainment

Brandon Bout is a junior at McCallie School and doesn't let cystic fibrosis affect his ability to play the saxophone for the school's band.

Photo by Dan Henry/Times Free Press.

IF YOU GO

What: 3 Blind Wines benefiting Cystic Fibrosis Foundation.

When: 6-9 p.m. today.

Where: The Mill, 1601 Gulf St.

Admission: $60 per team of one or two (21 and older), plus three bottles of same-label wine.

Phone: 615-255-1167.

Brandon Bout, 17, plays piano, guitar and tenor saxophone. He is on the junior varsity tennis team at McCallie School.

His friends, he said, call him The Music Snob, because of a preference for what he called "obscure bands," including Yes and King Crimson.

Every morning, Brandon wakes up at 5:15 to have breathing treatments before school because of his cystic fibrosis. He wears a vest, similar in look to life vests worn on boats, attached to a machine that massages his chest and improves his airflow.

"He's very diligent," Cheri Bout said of her son.

Cystic fibrosis is a chronic condition that affects the lungs and digestive system. The body produces an unusually thick, sticky mucus that can clog the lungs and obstruct the pancreas, making the breaking down and absorption of food difficult.

According to the Cystic Fibrosis Foundation, about 30,000 adults in the United States are afflicted with CF.

Last week, Cambridge, Mass.-based pharmaceutical company Vertex submitted a new drug application to the Food and Drug Administration for Kalydeco, a "medicine in development that targets the defective protein that causes cystic fibrosis," according to a news release.

Cystic fibrosis has been a part of the Bout family's routine since Brandon was 2 months old.

"He has truly a normal life, what we consider normal," his mother said. "He eats, drinks, does all the things he wants to do."

Ms. Bout has been working on 3 Blind Wines, a wine-tasting fundraiser for the Cystic Fibrosis Foundation, which takes place tonight at The Mill.

Peg Johnson, a recruiter at SunTrust Banks, said she has a special spot in her heart for anyone fighting cystic fibrosis because she has a deep fear of being short of breath.

"I can't even fathom what these poor kids have to go through every day," she said, "I feel so incredibly blessed."

In addition to being a fundraiser, 3 Blind Wines is an opportunity to disseminate knowledge about cystic fibrosis.

"It's our one big opportunity to educate the community on what cystic fibrosis is, to let them know what people who have CF go through on a daily basis," Johnson said.

Brandon, a junior at McCallie, is a typical teenager. He is looking at colleges. He wants to be a chemical engineer, his mother said.

"Some engineering," Brandon corrected. "I know I'm doing engineering, I just don't know what right now. Chemical engineering sounds nice."

In some respects, Brandon is lucky. He's never had pneumonia. He has had to spend minimal time in the hospital having antibiotics delivered intravenously. Two summers ago, he had to have several surgeries to treat an intestinal blockage.

But he's better off than others. Some CF patients are so ill that only a lung transplant is a viable option. For the Bout family, it's not even a consideration.

"We're not thinking about it," Bout said, "because he's healthy."

A believer in healthy living, Bout has made sure her son has grown up with good nutrition, vitamins and supplements. He has had acupuncture to relieve his symptoms.

Patients with CF often have trouble gaining weight. At 6-foot-3, Brandon is tall for his age, and thin, but so is his whole family, his mother said.

"You wonder," she mused, "genetics versus diagnosis." She puts heavy cream into high-protein shakes to help him put on weight. The doctors want him to gain. They also want him to be active. It's a double-edged sword, she said.

Besides the physical impediments CF can cause Brandon, and the demands on the family's time -- he's had to miss some school for treatments -- the condition can also create a financial burden on patients and their loved ones. Routine treatments and medication can add up to thousands of dollars a month, Bout said.

"You really have to wonder," she said, "are they looking at health-care costs?"