Edwin McCain performing "I'll Be" Live at 2014 Tampa Pig Jig Part 2
Continued from Part 1
"I can't even believe it when I say it," Whitney said, after rattling off the projected numbers. "It's unbelievable how the community has rallied around the event and Will's story."
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Six years after the initial diagnosis, Wellman looks like any other bearded, dynamic 31-year-old. While walking through Curtis Hixon Waterfront Park on Monday, he talked about his hobbies: running, forestry, hiking, kayaking. While the disease left him bed-ridden for several months and has manifested itself with throbbing migraines and blood pressure spikes, for the most part now, Wellman is able to lead an active lifestyle.
But it's one he has to balance with 25 hours of dialysis every week, a physically and emotionally taxing process that keeps his body functioning.
When the disease was at his worst, he carried 50 pounds of fluid in his body. If he stood for even 10 minutes, his ankles and legs would swell painfully and force him back to bed.
Wellman said that time was instrumental in his decision to enroll in Princeton seminary. Confined to bed, Wellman read "an absurd amount." Theology, philosophy, he consumed it all.
"I got a lot of bad theology when I was sick," Wellman said. "I got a lot of people telling me, 'This is God's will,' or 'There's reason for you getting sick.' In that way, I was really pushed theologically."
He explored the relationship between faith and suffering in seminary. What he left with was a deeper understanding of grace.
"People can't compute a 25-year-old getting deathly ill," Wellman said. "They're trying to make sense of it. But it's senseless to try and make sense of suffering. And it can actually be harmful."
For Wellman, who now works at a church doing adult education, the sense is made in spite of suffering. And that's where grace comes in. The more he studied, the more he learned that grace is everywhere.
"It shows its face in thousands of manifestations, whether it's on a very spiritual level or through family or friends," Wellman said. "Or it can be as simple as a group coming together to do something like the Pig Jig."
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But how exactly do a handful of friends create an event that, in four short years, has raised about $575,000 and become an anticipated Tampa event?
"I don't think we could've imagined in our wildest dreams we would be at this point in 2014," Whitney said. "It's a testament to our hard work, but also to Will. He's one of a kind. He's a special, special guy."
While attendance and donations have grown exponentially over the years, the mission of the event has remained the same. The schedule still centers around an amateur barbecue competition — Whitney stresses that this is a cook-off for the every-man, not professionals — and includes music and games, such as a mechanical bull and a cornhole tournament.
Now that the event has reached an elevated status, the founders are looking to add more of an awareness element to it as well. Because FSGS is so rare — about 5,000 cases are diagnosed each year in North America —it's more difficult to get federal funding or the attention from major pharmaceutical companies.
"It's hard to get their attention and for them to want to spend their time and resources to develop a cure or treatment for a disease that not as many people have," Whitney said. "That's a huge hurdle. Now that we have a platform, we've started this year trying to raise awareness and educate people about FSGS."
In addition to Wellman, there will also be FSGS patients from across Florida present at Saturday's event.
"For us, it's about Will, but there's also the big picture," Whitney said. "There's 5,000 people in this country getting diagnosed with this disease each year, and if we can help cure them, we want to do that."
Contact Caitlin Johnston at [email protected] or (813) 661-2443. Follow @cljohnst.