POULSBO — Imagine life with cystic fibrosis.
You might sit for hours every day, waiting for the medicine to help you breathe again. Inhale. Exhale. You wrap your lips around a plastic tube while other tubes are inserted into your nostrils. They connect to bulky nebulizers from across the room that pump oxygen and mucus thinners into your lungs. A vest is stretched tightly around your chest, shaking mucus loose.
For more than 700,000 people around the world, that is their reality — a reality of living with a disease for which there is no cure.
According to the Cystic Fibrosis Foundation’s website, cystic fibrosis is caused by a gene inherited from both parents; one in four people with the gene will develop CF, in which thicker-than-normal mucus interferes with the normal functioning of the lungs, liver or pancreas. Bad germs often become trapped in the mucus, leading to infections. While there are treatments available, most people with CF don’t live past the age of 40.
Founded in 1955, the Cystic Fibrosis Foundation dedicates itself to research, public awareness, and treatment of CF. The foundation hosts several events all over the country, raising millions of dollars. This includes their many 5K walks.
The 25th annual Poulsbo CF Walk took place June 3 at Vinland Elementary School. James Oas and his family regularly host the event. Their passion to raise funds and spread awareness of CF comes from their daughter Brianna, who many people at the CF walk consider a figure for CF awareness in the area.
“She was such a giving person,” Oas said of his daughter. “Brianna had a smile that was infectious and her spirit was always up.”
Brianna had an infection in her lungs at age 3 and was diagnosed with CF. At the time, the life expectancy was half what it is now.
“Brianna was under general anesthetic 18 times,” Oas said. She had several sinus surgeries, bronchoscopies and other treatments during her lifetime.
Brianna passed away on May 7, four days before her 29th birthday. Though her life was short, her father said she lived a full life.
“She might have only been 29 years old, but she lived a lifetime,” he said.
CF didn’t prevent Brianna from accomplishing great things. She joined the Northwest Junior Rodeo Association at a young age and won the title of Kitsap Junior Rodeo Queen when she was 17. She became a noted speaker at many CF fundraising campaigns in Washington state. Brianna met her husband to be, Nick Strand, while attending Washington State University; they married in 2011. In 2012, she graduated with a major in zoology and animal science. She worked as a veterinary practice manager in Port Orchard.
“She had a passion for animals,” Oas said. “That’s why they had so many at their house.” Brianna and Nick had several cats and dogs, as well as a horse, bull and large tortoise.
What Oas remembers most is Brianna’s strong faith in God.
“Brianna took the time with every family member and talked to them individually before she passed away,” Oas said. “[She] told us that we needed to get right with God to go to heaven, because that’s what she did.”
A celebration of Brianna’s life took place at Gateway Fellowship after the 5K run. Family members, close friends, and fellow CF fighters attended. Photos and videos of Brianna playing with her siblings, enjoying time with her parents, and joining hands with Nick in holy matrimony were displayed on a large screen. Photos and other items told a piece of Brianna’s story. A memorial of Brianna’s favorite dog, Bentley, was on display in the hallway. Bentley was buried next to her.
Speakers included Dottie Vlasuk, executive director of the Washington chapter for the Cystic Fibrosis Foundation; Dr. Bonnie W. Ramsey, who diagnosed Brianna with CF when she was 3; and John Waller, Brianna’s high school teacher. They all had nothing but fond memories of Brianna.
Oas recalled that his daughter refused to let CF define her. “’ I have to live with it, but it doesn’t define me,’ ” he recalled her saying.
CF Walkr participants walked to celebrate Brianna’s life — and to help speed the day a cure is found. Robert Nunnenkamp and Carol Jayne attended their first walk in Poulsbo, but they’ve participatred in every walk in Seattle since 1994, all for the sake of their daughter, Tori.
“First of all, she’s been lucky compared to a lot of other CF patients. She’s only spent one night in the hospital,” Nunnenkamp said. He said most patients spend weeks in the hospital when their lungs and other organs are infected.
Nunnenkamp and Jayne said they’re fortunate that Tori has stayed relatively healthy, but acknowledge that without organizations like CFF, that wouldn’t have been the case.
They’re also proud of the “normal things” Tori has done, such as earning a degree in English and Spanish, as well as study in Spain for a semester.
Jenna and Dan Ettlich, parents of Faith, 14, also attended the CF Walk. Faith is “very creative, full of life, joy and lots of humor,” Jenna said. Faith is not only gifted in swimming, playing the piano, and speaking Latin, but is equally good at being “the leader of the pack” for her five younger siblings. They thank the CF Foundation for making it possible for her to do all these things.
“To see her just be so thankful that her quality of life now has been effected positively at CF Foundation — all these treatments helps her live like a normal person,” Jenna said.
But life for Faith — like Tori and Brianna and every other person with CF — is not simple.
“Faith does two hours a day of treatment and that’s her everyday routine — no matter where you go, no matter what we do,” Dan said.
This year, the Poulsbo CF Walk raised $26,600; the goal was $32,500. Hundreds of volunteers participated. CF patients and their families, friends, and others who care walked proudly down the streets of cloudy Poulsbo, walking to find the light at the end.