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Organ recipient's awareness odyssey: Larry Rafes hopes his journey inspires others

  • AL ZAGOFSKY/SPECIAL TO THE TIMES NEWS Approaching Sand Island in Bethlehem. Larry Rafes completes the first half day of his 200-mile odyssey from Allentown to Cape May to raise organ donor awareness.
    AL ZAGOFSKY/SPECIAL TO THE TIMES NEWS Approaching Sand Island in Bethlehem. Larry Rafes completes the first half day of his 200-mile odyssey from Allentown to Cape May to raise organ donor awareness.
Published August 25. 2012 09:01AM

Larry Rafes is on the journey of a lifetime. A journey he never expected to make. An odyssey he hopes will serve as an inspiration to others.

Just 18 months ago, Rafes could hardly walk or even breathe. His kidneys were failing and every day that he waited for his name to be called for a transplant seemed longer than 24 hours.

Rafes received a kidney transplant at Allentown Hospital, and after several months of recovery, felt so healthy and hearty that he wanted to give something back.

"While he was waiting to get his kidney transplant, he couldn't wait, I couldn't wait either," said his daughter, Jaime Rafes, 26 of Vancouver British Columbia. "We never knew when he would be called. It was just a waiting game. He was feeling terrible-tired all the time and running out of breath. Since the transplant, it's gotten better and better every day."

Rafes, 60, who lives at Laurys Station, right on the Lehigh River, and loves paddling, couldn't wait to return to his hobby of kayaking.

"I've known Larry for about 20 years," said Chris Kocher of the Wildlands Conservancy. "I brought Larry on the first Lehigh Sojourn 16 years ago. That's when he got his passion for paddling. He borrowed one of my canoes from my backyard to make the first trip."

One morning, Larry was discussing his desire to give back over coffee with Jerry McAward of Jim Thorpe River Adventures.

"Larry felt the need to give back to the organ donation community," McAward said. "We were sitting at a coffee shop in January. He had some ideas and we came up with this river trip.

"It seemed like something that could become an annual event to attract a lot of people, get a lot of airplay, and could spread to other communities to make a splash anywhere. Kayaking doesn't really have a cause. Kayaking can use a cause like this."

McAward's godmother was a kidney recipient. He is registered as an organ donor, and, as a result of spinal surgery, he has donor tissue in his neck.

After months of planning and training, Rafes set out on a 10-day, 200-mile paddle from Allentown Canal Park to Cape May on August 17. To celebrate the launch of his Odyssey, 55 well wishers from the organ donor community, followed him as a flotilla from Allentown Canal Park to Sand Island in Bethlehem.

Rafes would continue to Easton, spend the night camping at Hugh Moore Park, and the next day portage to the Delaware River and paddle 25 miles to Point Pleasant where his arrival will be hosted by Bucks County River Adventures, a company whose founder received a kidney transplant in 2002.

Among the members of the transplant community who Joined Rafes for the paddle were Arlene Niess from Allentown whose husband donated his corneas; Patty Glascom of Bethlehem whose daughter was given the gift of sight with a cornea transplant; and Maureen Augenstein of Macungie whose younger brother was a donor.

Vickie Dash of Zion Grove, Schuylkill County, had two kidney transplants. She expresses her life-changing experience through paper collage.

"I started with a blank piece of paper. The pieces of paper started forming images and evolved into telling a story of my transplant, my waiting, and the healing process that was involved," she said.

An exhibit of her collages were shown at the Banana Factory in Bethlehem and at the Ice House on Sand Island during the day of the paddle.

Tom Stalsitz from Center Valley and Joe Brugger from Perkasie paddled together. Brugger was born premature with renal failure. Five years ago, at age 24, he was in need of a kidney transplant.

"I was visiting my son's house one day and Joe was there," Stalsitz said. "Joe looked kind of lethargic. I asked why and learned that it was because his kidneys were failing. I found that he needed a kidney.

"I asked 'what does it take?' He said, 'Just get tested.' I gave him my kidney. Since then, there is nothing different about my life. I take no medicine. I have no restrictions."

"Organ donation is not something we like to think about or talk about," said Judy Knoop, a transplant social worker at Lehigh Valley Health Network, "but Larry's being willing to talk about it gets us all kind of thinking about-not death but life."

"When Larry told me about his project, I thought it was amazing," she continued. "Many people get transplants, but there's not many Larrys who are willing to put themselves out there and talk to the community about how important it is to be an organ donor."

The Lehigh Valley Hospital performs kidney and pancreas transplants.

At the Sand Island lunch spot, take-out for the flotilla, and midday stopping point for Rafes, he said. "We made a splash. Everyone had a blast. A lot of people got to experience the river. I'm looking forward to every day all the way down. This is going to be the adventure of a lifetime."

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