Diagnosed with cystic fibrosis at 2 weeks old, Josh Stokell concedes that, many times, he has felt despondent and overwhelmed.
But he’s not allowing time for that these days. Despite learning recently that he needs a double-lung transplant to save his life, Stokell isn’t getting down. He’s getting busy in an effort to help others with the disease.
As part of his master’s program at UNC Charlotte, Stokell started a research project that studied the bacteria in his lungs affected by cystic fibrosis. He’s added to that recently by studying results from adolescent cystic fibrosis patients, courtesy of a National Institutes of Health grant.
“I have the capability to help others through my work,” says the 35-year-old Stokell, who lives in the University City area. “That’s what really drives me the most.”
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That attitude has friends and family rallying on his behalf. They’re helping to spread the word about a fundraising drive through the Children’s Organ Transplant Association, a nonprofit that helps with transplant-related expenses.
COTA’s campaign for Stokell has a goal of $75,000 to cover his out-of-pocket costs.
Stokell has health insurance, which he’s eligible for due to his disability and through his job at UNCC. “Unfortunately, many of the transplant-related expenses are not fully covered, including mandatory anti-rejection medications that I’ll have to take for the rest of my life after the lung transplant,” he said.
There’s no deadline for the fundraising, but time isn’t on Stokell’s side.
He says that given his declining lung function – down steadily in recent years, to about 24 percent – he could die within a couple of years if he doesn’t have the transplant. The Cystic Fibrosis Foundation says the average life expectancy for CF patients is 41, though it has grown in recent years as therapies and treatments improve.
He hopes to have the double-lung transplant sometime this year, depending on what doctors say after an examination this month.
Stokell’s voice occasionally strains when he talks. He’s on oxygen full-time. He has to take an oxygen tank anywhere he goes and wear a device on his face.
He can’t climb stairs without having to pause.
“I’m very tied to my home, too,” he says. “I have to do so many treatments and exercises just to keep myself going each day. Each one of my treatments takes at least an hour to do, and I have to do them at least three times a day. They make me very tired.… Anything that disrupts my routine can throw me off for days.”
Andrew Davis of Mooresville, an advertising account manager at The Charlotte Observer who has known Stokell for 20 years, is a coordinator in the fundraising effort. He says his friend’s research project “speaks to his character and who he is.”
“Getting a Ph.D. is a huge accomplishment anyway, much less a person with his condition,” said Davis, 38. “It’s such a big deal, because so many terminal CF patients just kind of resign themselves to their fate and don’t really do anything. They just kind of hold on to what health they have left and do what they can to help themselves.”
Stokell felt that same kind of paralysis as a UNCC undergraduate. Struggling to manage his CF physically and emotionally, he spent some time on academic suspension. “Then I started to find the right balance in my life and began to turn things around,” he said.
He made the dean’s list and earned his doctorate in biology in 2013. By that time, his work had been published in the Journal of Cystic Fibrosis and other scientific journals. He had received a post-doctoral fellowship from the Cystic Fibrosis Foundation that let him continue his research into treatment options for lung infections.
Stokell credits his mentor, UNCC biology professor Todd Steck, with encouraging him to go to graduate school. “When I started the master’s program, one of the classes I enrolled in was looking at microbial (bacterial) communities in the environment. When starting this class, I was assigned a project to look at groups of bacteria in an environment.
“It was natural for me to pick cystic fibrosis because I have the disease, and I have access to sputum samples, which is the stuff that I cough out. All of the sputum has tons of different bacteria in it. We found some interesting results by looking at the samples, such as how it affects me over time.… I was thinking, if I can find out all this information in myself, how can I use this to add to the knowledge of the CF community?”
His interest and momentum grew. “My mentor said, ‘You have such a great project, why don’t you consider doing a doctoral thesis on this?’ I’ve learned a lot more about CF than I ever did before. It’s fascinating. I love it.”
Stokell and Steck applied for the NIH grant, which “allows us to follow adolescent patients and do kind of the same thing we did with my project,” Stokell said. “If we can look at multiple people – especially at a very young age, when the disease is continuing to develop – we can gain a whole lot more information.”
Davis says his friend’s determination helps inspire and provide perspective.
“His attitude is always so positive,” says Davis, part of a support network that includes Stokell’s mother, brothers and girlfriend. “He has a lot to deal with every day.… That speaks volumes to me when I think of how tired I am or what I’m going through.”
Reid Creager is a freelance writer. Have a story idea for Reid? Email him at email@example.com.
Want to help?
A Strikes for Stokell bowling tournament will be 2-4 p.m. May 16 at Strike City, in the EpiCentre at 210 E. Trade St. in Charlotte. Details: 704-661-7892 or firstname.lastname@example.org.
▪ To donate to the Children’s Organ Transplant Association for Josh Stokell’s double-lung transplant: http://cota.donorpages.com/PatientOnlineDonation/COTAforJoshuaS.
On Facebook: www.facebook.com/JoshNeedsOurHelpNow