Family thanks U doctor for son’s care by supporting cystic fibrosis research
When Jason Swain was 18 months old, his parents noticed that he was not gaining weight and his sweat seemed salty. After several visits to the doctor, Jason’s family got the devastating diagnosis—Jason had cystic fibrosis.
The year was 1972 and at that time children with cystic fibrosis (CF) were not expected to live to age 10.
Cystic fibrosis (CF) is a hereditary disease that disrupts the production of proteins in cells, affecting the body’s movement of salt and water in the lining of internal organs. The disease causes blocked airways leading to recurrent lung infection, inflammation, and progressive scarring. It also makes it hard for the body to absorb food.
Jason’s father, Ron Swain, says that he and Jason’s mother—his late wife, Sue Swain—sought the best care possible for Jason, bringing him to the University of Minnesota. “We found out very quickly that the University had the longest life expectancy,” says Ron. CF patients treated at the University live nearly a decade longer than the national average, now age 37.
At the U from the beginning
When Jason came to the University as a toddler, he was treated by Warren Warwick, M.D., founder of the University’s Cystic Fibrosis Center. Warwick is the inventor of the first CF chest compression vest, which helps to clear the lungs and has extended the lives of many people with CF around the world, including Jason’s.
“Dr. Warwick was so careful to explain everything,” Ron recalls, noting that Warwick taught Jason and the family the importance of sticking to a CF regimen, which helped him to stay healthy. “He made kids accept their treatments.”
Jason’s treatment included taking as many as 30 pills a day and receiving chest-pounding therapy from his parents twice a day to avoid the cycle of inflammation and infection common in people with CF.
As Jason aged, he continued to see University specialists, including Jordan Dunitz, M.D., and Joanne Billings, M.D., M.P.H.
Jason graduated from the University of Minnesota with a degree in music composition and played solo classical guitar, as well as in many rock bands, throughout his teen and adult years. He bought a house in Minneapolis, became a proud uncle, and enjoyed traveling with his family.
When Jason’s lungs began to weaken in 2004, he sold his house and moved in with his dad in Excelsior, Minnesota. He received a double-lung transplant in March 2006 but suffered many complications.
“He was the sickest transplant patient they’d ever seen,” says Ron. Jason went into a coma for a week and his body swelled. He later developed a serious infection and both of his feet had to be amputated. “They didn’t expect him to pull through, but he did.”
As Dunitz recalls, “He had a rocky time with the transplant and rebounded. His drive and his motivation were really inspiring. He worked very hard to keep himself well.”
Jason adapted to life with prosthetic feet and maintained his sense of humor. “He called himself the bionic man,” recalls his stepmother, Marty Swain. And he joked that he’d rather have titanium legs, as opposed to the more realistic, flesh-colored ones, because they looked cooler.
After Jason passed away in January 2010, his brother, Eric Swain, thanked University doctors and staff in Jason’s eulogy:
“I would like to thank Dr. Dunitz, everyone on Jason’s cystic fibrosis and transplant teams, the nurses, aides, and therapists who looked after him (and became his friends) at the University of Minnesota Medical Center,” he said. “They did a fantastic job and we will never forget it.”
“After the transplant, he had two really good years,” Ron says. Jason was able to live on his own again, in downtown Minneapolis, and he traveled to Spain with his family in the summer of 2008.
“That was a great vacation. I was so happy we were able to do that,” says Marty, adding that the trip was especially meaningful because it allowed Jason to spend time with his young niece, Olivia, and nephews, Dylan and Aidan, who live in England. “They were his pride and joy.”
Although the last few years of Jason’s life were tough, Jason’s family credits the University with extending his life far beyond what doctors thought was possible and for ensuring that he had the best quality of life. “We never expected to see adult CF,” says Ron.
Giving and gratitude
Following Jason’s death, the Swain family wanted to give back in appreciation for Jason’s care. “They were all good to Jason,” Ron says. “We just decided we wanted to do something.”
Ron, who became involved with the CF Foundation in the 1970s and has remained a committed volunteer, says he understands the importance of medical research and wanted to make a difference.
So Ron and Marty, along with Jason’s brother Eric Swain, made a surprise $25,000 gift, in addition to nearly $9,000 collected through memorial gifts, to support Dunitz’s CF research. Ron and Marty also made a planned gift—designating a portion of their estate to support future CF research.
“As difficult as everything was the past four years,” Ron says. “Jordan made it easier.”
A grateful Dunitz says the gift will support projects aimed at improving the quality of life for CF patients. “Philanthropy is the initial investment in research that allows us to begin the studies that can eventually help identify new treatment approaches to improve the quality of lives for our patients.”