TAMPA — Each year Will Wellman attends the Pig Jig in downtown Tampa, he climbs to one of the highest points of Curtis Hixon Park and comes close to tears as he admires the size of the crowd.
This year, on Saturday (Oct. 22), he'll see people enjoying barbecue, beer and music while raising money for research, advocacy and awareness to help patients with the rare kidney disease, focal segmental glomerulosclerosis.
And he'll know that it all started with him.
In 2008, Wellman, now 33, was diagnosed with the disease.
"I was bedridden most of the time," he said. "I went through chemotherapy, blood treatments. I had 40 to 50 pounds of water weight on me so I couldn't even walk and the medicine made me nauseous. With this disease, you're body is urinating out all of your protein so you have no energy."
The next step was a kidney transplant and Wellman's mother, Joyce Wellman Fisk, was a perfect match.
But the organ didn't take. The disease came back aggressively and within three weeks it had to be removed.
"That was super depressing," Wellman said. "The surgery was awful then you have the beauty of your mom pulling one of her organs out and giving it to you so I felt a lot of guilt."
Wellman underwent dialysis treatment for the physical problems and attended seminary school for his psychological health.
"Getting away from everything and doing something else, it built up my stamina, energy and strength.
During his first year in seminary school, his mother called with some good news: His friends were throwing a backyard barbecue to raise money for Nephcure Kidney International, a Pennsylvania-based nonprofit that supports research and treatment to benefit patients with focal segmental glomerulosclerosis.
"Nephcure would do these walks to raise money, but they didn't raise much and they aren't as fun. My friends want to drink beer and do something else beside walk a mile and go home so they said let's have a barbecue contest and charge people."
In a back yard in 2011 with 80 people attending, Pig Jig was born. Now in its sixth year, the venue and the crowd have grown, and the fundraising goal is $800,000.
"It's super humbling to know these friends I met in middle, high school and college came together and they are so committed. They have full-time jobs and putting on Pig Jig is like another full-time job for six months out of the year."
Wellman continues to undergo dialysis, for about 21 hours each week. He works full time in adult education. He looks forward to Pig Jig each year.
At 1:30 p.m. Saturday, patients will gather in a sponsorship tent for a social event where the chief executive officer of Nephcure informs them what is going on with the disease, progress made in lobbying Congress for additional rare disease research money, and more.
Carving out time during Pig Jig for socializing with other patients started last year.
"Some people who've had this disease for a while before Nephcure and the Internet, they had this weird disease they knew nothing about and were totally alone," Wellman said. "Then they come to this and speak to kids and people their own age and get to talk about it."
The effort has drawn attention from out of state.
During last year's Pig Jig, a couple from New Orleans flew to Tampa to attend for their son.
This year, a mother and daughter are driving from New York to attend for a son and brother with the disease. They created a blog to document the trip and raise even more awareness.
On Saturday, Wellman will make sure to watch a performance by one of his favorite bands — The Weeks.
And, at one point, when he's ready to let go, he'll find that high spot.
Contact Arielle Waldman at [email protected]