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Tampa organ donors, recipients focus of free film Saturday

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Published:   |   Updated: March 13, 2013 at 11:16 AM

At his very sickest, with his kidneys failing and his overall health deteriorating, Darren Sussman made a vow.

If I get a kidney and get better, he promised himself, I will devote as much of my spare time as possible to educating the public about the transplant community and the urgency of organ donation.

Three years later, the Orlando man got the call every patient on the transplant waiting list is hoping for: a good match had been found. On Dec. 23, 2010, he received a new kidney and pancreas in an operation at Tampa General Hospital.

Sussman never forgot the pact he made. Some would say he kept his word tenfold.

On Saturday, his documentary "Pay It 4Ward" – a 90-minute film featuring five transplant stories, all from the Tampa Bay area – will premiere at Muvico Centro Ybor. The 2 p.m. screening is free and open to the public.

This ambitious effort is the second film project produced and funded by Sussman, 38, since his double transplant. The first is a 22-minute video on his personal journey called "The Casey Connection." It was named for Casey Paleveda, a 22-year-old South Tampa man who died of a drug overdose – and whose organs helped save four recipients, including Sussman.

To date, Sussman, a self-employed Web designer, has spent about $35,000 of his own money in production costs for the two films. He's also donated hundreds of hours in speaking engagements and given out 2,500 DVDs of "The Casey Connection." That video has been seen online by thousands, he says.

The audience is certainly out there. According to the United Network of Organ Sharing, some 116,920 people are waiting for a lifesaving organ transplant.

"I got a second chance in life, thanks to Casey, and to his parents for making that decision. And I'm going to make the most of it," he says. "That means giving back. It's not a burden; it's a privilege to do this."

Sussman also has kept his promise that he wouldn't profit from his outreach work. Everything he does – his time and his related costs -- he gives away freely. He's even footing the bill for the theater rental on Saturday.

"We're so lucky to have an advocate like Darren," says Betsy Edwards, a spokesperson for LifeLink Foundation in Tampa, the organ procurement nonprofit that found his donor. "He's a very passionate volunteer. He goes above and beyond in being so giving and so gracious."

With all his contacts in the transplant community, Sussman selected five distinct stories to illustrate how donating an organ can make a profound difference in a recipient's life. They include: Louie Olivarez, TGH's first triple transplant; 5-year-old Isaac Hallam of St. Petersburg, who underwent two liver transplants; Julie DeStefano of Bradenton, who has received two donor livers since her diagnosis of Budd-Chiari Syndrome; airline pilot Greg Lewis of Bradenton; and Tom Dye of Valrico and his daughter, Stephanie Dye of Spring Hill, both heart recipients.

"Every day I feel blessed and grateful," says Stephanie Dye, a University of South Florida graduate who has a photography business on the side. "When Darren called, I didn't think twice about participating. He's got such drive. … There are so many myths out there and he wants to set the record straight."

Sussman also wanted the film to demonstrate how recipients are "paying it forward" since getting a new lease on life. For example, Olivarez and his partner purchased land in Seminole Heights to build a "Hospitality House" where families can stay free while their loved ones are in the hospital. And Lewis, who has returned to his job as a commercial pilot, raises money for organ donation awareness through triathlons.

All of the featured recipients, including the mother of the St. Petersburg youngster, volunteer as public speakers.

"Every transplant patient has a story," Sussman says. "How people handle it afterward varies. This is how I'm doing my part."

His own story is very unusual. Due to confidentiality guidelines, the medical staff could not tell his family the name of his donor, other than that he was a 22-year-old male.

While Sussman was in recovery, his mother took a coffee break to read The Tampa Tribune at the hospital. That's when she read Palevada's obituary, and put two and two together. She and Sussman's partner, Doug Lacey, decided to go over to the funeral home to pay their respects.

They went with mixed emotions, though. Their happiness over Sussman's getting a gift that would reverse his renal failure, get him off dialysis and let him live a normal life was tempered by the knowledge another family was immersed in grief.

They left a thank-you note with the funeral director to give to the parents. Soon after, they got a call from one of Paleveda's older brothers. We would love to meet you, he told them.

That was the beginning of a beautiful friendship, Sussman says. After he wrote a letter of gratitude to the Paleveda family a few weeks later, the two clans met and formed a close bond. Now Sussman and Lacey visit them in Tampa at least once a month.

"We met and we clicked," agrees Deb Paleveda, a first-grade teacher at Roosevelt Elementary School in Tampa. "For us, it was a no-brainer to donate Casey's organs. To think this has come out of it takes away some of the pain of losing him."

Her youngest son, who she describes as a sweet youngster who loved sports and animals, got addicted to prescription drugs after suffering a back injury. The problem got worse, and despite many attempts at intervention by his parents, he never escaped the downward spiral of addiction.

The night before he died, he and his mother were arguing in the car. He told her he was depressed that he hadn't done anything great in his life. She turned to him and said, "I really have a good feeling you're going to do something fantastic." Yeah, right, he replied.

"And he did," she says. "That makes me really happy. At this point, I think he's looking down and he's proud."

She is also proud of what Sussman has accomplished in just two years since the operation. His own life is an example of the good that can come out of a sad situation.

"Casey lives on through Darren and the others who got the other organs," she says.

For Sussman, his work will continue. From the moment he awoke from his operation, "I've felt 100 percent better. I haven't even had a cold," he says. Besides his volunteer work in the transplant community, he's taking private pilot lessons. He thinks Casey would like that.

"Now I feel like I'm living for two people," Sussman says. "I owe it to Casey and his family to make the most of my life and make it positive. That's a responsibility I take very seriously."

 


mbearden@tampatrib.com (813) 259-7613

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