The latter is the most dear to her heart. A box of tissue was handy when Rosemary Schuster spoke about her 6-year-old great-nephew who was born with the disease.
Cystic fibrosis (CF) is a life-threatening disease that affects the lungs and digestive system. In order to get the disease, both parents unknowingly carry the defective gene, but not every one of their children may have CF.
“My great-nephew has never been hospitalized for the disease since his birth,” said Rosemary with a reassuring smile, “and that is encouraging. His disease was diagnosed at birth. That makes a difference and that’s progress! They are getting closer in finding a cure.”
According to the Cystic Fibrosis Foundation, early diagnosis allows for early treatment that leads to better overall health. There are 30,000 people with CF in the United States.
“That doesn’t sound like very much, but yet at every fundraiser we have, someone always come up to me and says that they know of someone with CF,” added Rosemary.
In the 1950s, children with CF seldom lived to attend elementary school. Due to extensive research and new medical treatments and therapy, many are living into their 30s and beyond. More than 46 percent of the people with CF today are over 18.
Rosemary explained that since there aren’t as many cases of the disease in the U.S., there is no federal funding available in helping to find a cure for CF. According to the CF Foundation, nearly 90 cents of every dollar of foundation revenue goes to support research, medical and education programs. For the past six years, Rosemary has had a garage sale at her home in Baxter, with all revenue going to the CF Foundation. She also organizes an annual weekend brat sale at a local grocery store, and she takes part in the annual CFF Great Strides Walk in May at St. John’s University near St. Cloud. The walk is the CF Foundation’s largest fundraiser, with more than 250,000 walkers taking part nationally that raised $40 million to find a cure in 2012.
According to the CF Foundation, a defective gene causes the body to produce thick, sticky mucus that clogs the lungs which leads to lung infections. The mucus also obstructs the pancreas and prevents enzymes from helping the body to digest food. Symptoms of CF include salty-tasting skin, persistent coughing, wheezing or shortness of breath, poor growth or weight gain, and frequent greasy and bulky stools.
To combat these symptoms, Rosemary’s great-nephew, who will start first-grade next month, wears a mechanical vest twice a day that vibrates to shake the mucus loose from his lungs to help clear the airways. He also breathes a medicated mist through a mouthpiece of a nebulizer for several minutes twice a day.
Before each meal, he swallows an enzyme capsule to help digest his food.
“But you would never know that he has the disease,” Rosemary said with a tearful smile. “He’s active like any young boy. He loves to play soccer, ride his bike, runs around with his cousins and friends, and he doesn’t get out of breath. He is going to start a martial arts class, and he’s very smart and mechanical, too. He really keeps me on my toes!”
His parents take him every three months for a checkup at Children’s Hospital & Clinics in Minneapolis, one of the 110 care centers accredited by the CF Foundation in the U.S.
Rosemary added that there are many strains of CF, but her nephew has one of the more common ones. According to the CF Foundation, there are over 10 million people in the U.S. who do not know that they are carrying the defective gene.
Rosemary is grateful that the State of Minnesota started screening all newborns for CF in 2007, the same year that her nephew was born. Today, all 50 states are doing the test.
She noted that one of the first signs that her nephew had CF was that he did not pass a black/green colored stool (meconium), which newborns usually pass during the first few days after birth. The meconium is the waste the infant collects while in the uterus. In an infant with CF, the black stool is too thick and sticky to pass, and the intestines become blocked. As a result, Rosemary’s nephew was flown to Children’s Hospital in the cities.
“I really don’t know if I had ever heard about the disease before,” Rosemary admitted, “but when it affects you, you want to do as much as you can, and I will keep doing fundraisers for as long as I am able.”
Rosemary was born on a farm near Brainerd and graduated from that city’s high school. She moved away for 40 years, living in the states of Washington and Arizona. She returned to the lakes area in 2006, two years after her husband, Stephen, died after nearly 30 years of marriage. She has two stepgrandchildren and two stepgreat-grandchildren. She met Steve while working as a flight attendant for Braniff Airlines where he was a pilot. Flying the skies for seven years, Rosemary also worked on charter flights bringing soldiers to and from Saigon during the Vietnam War.
During those flights, they usually flew from Travis Air Force Base in San Francisco, to Honolulu, to the Philippines and then to Saigon.
When nearing Saigon, Rosemary remembers that the plane would descend very fast in order to land. Soldiers would exit or enter the plane quickly, and no time was wasted during take-offs in order to avoid any attacks.
After her flying career, she went back to school and earned a B.A. degree in comparative politics, the study of various governments around the world.
She and Stephen traveled to various countries around the world, and she has continued to do so since her husband’s death. She remembers the Amazon River cruise. When they got off the launch, there were young boys waiting for them with snakes hanging around their necks.
“For $1 they would take a picture of us with a snake around our necks, but I didn’t,” she grimaced as she shook her head.
And she spoke of a trip to the island of Yap in the western Pacific (north of New Zealand) where the airplane had to buzz the field to scare the animals off the runway in order to land.
Wherever she travels, she’s usually hiking. To help stay trim and fit, she goes to a health club four times a week.
Her trekking has taken her to Nepal, where she and others in a tour group hiked the trails of the Himalayas. The sherpas, Himalayan people who are skilled mountaineers, carried all the hikers’ gear. Porters and kitchen staff also traveled with the group.
“All we had to do was walk,” Rosemary recalled. “We would cross rope bridges and visit villages with no electricity. I made it to 12,000 feet and then flew out in a helicopter. The culture was so different. It was a fantastic trip!”
She has hiked to the bottom of the Grand Canyon while wintering in Arizona, where she was a member of a hiking club. Since she lived in Washington, Mount Rainier was a popular trekking excursion. On one of those hikes, Rosemary and her friends hired a woman who owned llamas that carried their gear.
They camped with bears nearby that were searching for ripened huckleberries to devour.
“The woman told us not to worry about the bears as the llamas would make a cackling sound when they smelled the bears and that would keep them away,” Rosemary said. “Just before sunrise, the llamas began to cackle. We peeked through our tent door, and the llamas were facing us, so we knew the bears were behind the tent, but they didn’t bother us, and our food was stored in metal containers.” Rosemary also shared that the woman who owned the llamas made pancakes for breakfast for the hikers one morning.
“I saw that she used the same bucket from which the llamas drank water to get water for our pancakes, and she didn’t wash it out,” she laughed, adding she did not become ill.
She still walks a lot and her hiking adventure is now once a year on the Superior Hiking Trail, a 296-mile foot path that stretches from Duluth to the Canadian border along the rocky ridges of Lake Superior.
Rosemary does some quilting, but she claims it isn’t one of her passions. But she would like to make quilted Christmas stockings to sell as a fundraiser for cystic fibrosis. And the rumors that she’s a gourmet cook? “That’s a myth!” she laughed.
In addition to raising funds for CF, Rosemary would like to return to Poland for another visit and perhaps some other trips.
Remembering the American Values class she took in college, she concluded, “The instructor said that we should always have one dream that does not come true, and that would probably be to take a rafting trip down the Salmon River in Idaho. But I waited too long to do it, so that’s for my next life.”