Fund honors sons, helps patients facing similar challenges
By Allyson Bird
Office of Development and Alumni Affairs
Betty and Bill Tysinger endured the unimaginable, losing both their sons to the same disease only three years apart – almost to the day.
John Tysinger died from cystic fibrosis at age 36 on Oct. 13, 2007. His younger brother, Jeff, died from cystic fibrosis at age 37 on Oct. 16, 2010.
The Tysingers had their sons tested for the disease when John was 3 and Jeff was 9 months old, after learning of a cousin’s diagnosis. Both boys were misdiagnosed, though, and more than two years passed before physicians at Duke University properly identified the problem.
Cystic fibrosis causes thick, sticky mucus buildup in the lungs, digestive tract and other parts of the body. The Tysingers had no family history of the disease, yet both parents carried the recessive gene that causes CF. Their sons’ diagnoses meant frequent trips from their Spartanburg home to see specialists, first at Duke and then at MUSC, to care for John and Jeff.
The Tysingers realized, over time, that the logistical challenges of the disease – travel, lodging and equipment – proved to be among the most draining. Health insurance covered the big expenses, but the time and money in between added up.
Betty and Bill Tysinger established the John and Jeff Tysinger Patient Assistance Program in 2012 to benefit people carrying the same burden.
“We really wanted to help other families of children and adults with cystic fibrosis,” Betty said. “We thought John and Jeff would like it, too."
The Tysinger Patient Assistance Fund offers as much as $500 for a patient identified by doctors, social workers and others involved with the MUSC Cystic Fibrosis Center. A committee within the center then reviews applications and makes recommendations on how to distribute the money.
The sons’ pulmonologist at MUSC, Dr. Patrick Flume, treated both John and Jeff for nearly 20 years. He said the fund reflects Bill and Betty Tysinger’s support for their sons and desire to extend that support to others.
“Both Jeff and John taught me a great deal about what it is like to live with CF, and truly influenced me to listen more closely to my patients,” Dr. Flume said. “It helped me know what best to do for them, but I learned some things that I could take to other patients as well.”
John and Jeff never let their disease define them. John, the athletic brother, played on his high school soccer team and, after his health deteriorated, he took up pool and poker. He studied holistic medicine and the Chinese martial art of Wing Chun, and he worked as a personal trainer.
Jeff, the techie, graduated from the College of Charleston and worked with his father in the computer sales business before taking work with larger companies. He married Jennifer in 2000 and, before they left for their honeymoon at Disney World, they picked out a Cocker Spaniel puppy named Jenna, who became a companion for the remainder of Jeff’s life.
By the time John died, his brother already was very sick. Jeff underwent a lung transplant just months after John's death in late 2007 and survived for nearly three more years.
As their mother explained it, “You just find a way to live with this. We’ve certainly struggled at times, but it’s not that they didn’t have fun, or we didn’t do a lot of things together. John and Jeff had the courage to live fully, sometimes recklessly, with a passion unique to people who know the limits of their own lives. John and Jeff are still alive in our memories.”
Kelly Draganov, a 43-year-old mother, received a grant from the Tysinger Patient Assistance Fund so that she could rent a portable oxygen concentrator for medical appointments before her double-lung transplant. “With all of the medical bills I have racked up this year, the grant helped to offset the financial burden as well as give me peace of mind that I have adequate oxygen for my travels,” she said.
Draganov, a James Island resident, has been an MUSC patient for a decade, and received a lung transplant in January at the University of Texas Medical Branch at Galveston. “With the help of many, I have beaten all kinds of odds,” she said. “Statistically, I should not be alive.”
She remained in a drug-induced coma for more than a month, and her muscles atrophied so much that she could not hold up her head. She learned how to move, write and speak again but relies on nearly 50 pills per day, plus intravenous and inhaled medications. Draganov gets stronger each day but remains 1,100 miles from her husband and their 11-year-old daughter while she heals.
Betty and Bill Tysinger envisioned helping people such as Draganov, lessening their burden just a little, when they launched the fund.
“Having two sons with CF and realizing what that entails for a family, we were able to somehow manage, but we saw other people really struggle with what it demands,” Betty said. “Listening to people at MUSC talk, we thought this could help in ways that were not already available.”