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Sean Kirst: Woman who survived thanks to organ donor wants to help others

Lea Sobieraski and William Ortega both had compelling reasons for attending commencements Saturday in greater Buffalo. Sobieraski was in cap and gown for the Daemen College ceremony at Kleinhans Music Hall, earning a master's of science degree in leadership and innovation, another step in a journey of almost indescribable meaning.

"The greatest part for me was walking down to my seat, and my parents were waving, and my stepdad was waving," she said. "They were all so happy, and they all did whatever they could to get me to where I am. At one point, I never knew if I would get the chance to walk a stage at all."

Ortega, for his part, felt too ill to attend the graduation celebration at SUNY Buffalo State. He hoped to show up and watch the burst of joy from many young people whose lives he had helped to change, an affirmation of the way he has spent his career at Buffalo State.

While Sobieraski and Ortega have never met, their dreams follow similar trajectories. More than five years ago, Sobieraski, a Lockport native, was a standout basketball player at SUNY Geneseo. Just before a road trip for two big games in the North Country, nagging discomfort in her stomach convinced a trainer to send her for an ultrasound.

Within five days, doctors told her the unthinkable: She had Wilson's disease. Her liver was failing her.

Sobieraski survived only because an anonymous donor, a few months later, provided the liver transplant that saved her life.

"What happened to me," she last week, "I see it as a platform."

She referred to the dire need in this state for more people willing to be organ donors upon their deaths, a cause that Sobieraski has embraced. Sarah Diina, spokesperson for Unyts of Buffalo – a local eye, organ, tissue and community blood bank – said New York is second to last among the 50 states for the number of people registered to donate organs.

Yet the state is third in the nation for most patients in need of a transplant.

That list includes Ortega.

William Ortega with his family: Left to right, his daughter, Alexandria, his wife, Tamiko, and his son Gabe. (Family photo)

Typically, he would have been at Buffalo State for its commencement. Ortega is a senior counselor in the school's Educational Opportunity Program. His duties involve helping young men and women from difficult situations learn the skills that allow them to succeed in college, and in life.

Those needs, Ortega said, often go far beyond the economic. He grew up in the 1970s on the lower East Side of Manhattan, in a neighborhood plagued by addiction and bloodshed. Achievement in school, he said, was seen as a sign of weakness. Teen identity was measured by what you accomplished on the streets.

Through a chain of circumstance he still finds difficult to believe – built on a chance meeting with a guidance counselor who thought he showed a spark of hope – Ortega left New York City after his junior year of high school to begin college in a special preparatory program at Buffalo State.

"I left everything I knew, everything I loved, to come to a city I knew nothing about," Ortega said.

Almost 45 years later, he is deeply loyal to Buffalo. He and his wife, Tamiko, have twin 20-year-olds, Gabe and Alexandria. At Buffalo State, he said, he "tries to help every kid, the kid struggling to acclimate, the kid who left home because of violence, the kid who has gone through something that I saw or that I lived."

His passions remain his family and his career, which he describes as more of a mission than a job.

"He takes care of the whole person," said Yanick Jenkins, director of the EOP at Buffalo State, speaking of the way Ortega interacts with students. "He helps them understand why they're here and what they need to do."

As a teenager, Ortega found out he was a diabetic. He learned to handle his own insulin injections, doing what he needed for decades to cope with that condition. But the kidney problems are beyond his control. A few years ago, tests showed his kidney function was down to 35 percent. It has fallen another 20 percent since then, he said.

If those numbers continue to drop, Ortega, 62, said he will need dialysis, a difficult and tiring procedure that would drain much of his time and energy throughout the week.

"What scares me more than anything," he said, "is not being able to work again."

Ortega needs a kidney transplant. He nearly had a match with a living donor a year ago, but the donor – a close friend – learned at the last minute that she did not qualify. He said he hoped to take part in a kidney-paired donation program at Erie County Medical Center until his wife learned she was medically ineligible, a situation that underlines Diina's simple point.

The great majority of patients needing transplants, she said, are awaiting kidneys. She describes the overall need as "a public health crisis." People are dying every day, Diina said, who might live if more New Yorkers signed up to be donors.

Right now, Diina said, the percentage of eligible participants in the eight-county region of Western New York who are willing to be donors is 37 percent, the best in New York, outpacing the statewide average of 33 percent.

The national average, she said, is 55 percent.

She estimates that around 1,000 Western New Yorkers await some kind of transplant. The easiest way to join the donor registry, she said, is by visiting their website, and filling out an electronic form.

"Just by signing up, you have the potential to save up to eight lives through organ donation, and to greatly enhance up to 75 lives by eye and tissue donation," Diina said.

Sobieraski, 26, is a vocal advocate. She stepped off the stage Saturday and embraced the people central to her recovery, including her mother and stepfather, Wendy and Sam Pecoraro, and her father, Mike Sobieraski, a school principal in Lockport.

Since childhood, he said, "Lea's always been willing to put others before herself," a philosophy she promises to maintain once she becomes director of operations for women's basketball at Canisius College.

Mike Sobieraski had been willing to donate part of his own liver to Lea, but in the end only a full transplant could save his daughter's life. She does not know the background of the anonymous donor who rescued her, but that person is on her mind whenever she speaks about the importance of organ donations, urging her fellow Western New Yorkers to sign up for the registry.

She remembers, just before her surgery, when her condition grew so severe she was enduring "whiteouts," or utter loss of vision. Her father – recognizing that a donor he never met had the courage to sign up for the registry – said the entire family shares one basic sentiment.

"We're all very fortunate that Lea's still here," he said.

Sobieraski never forgets. She describes organ donation as a "superpower," a chance for an ordinary person to save another life.

As for Ortega, he will stay on the job for as long as he is able. Every year, he said, he greets students "who can't write a check, don't know the proper way of writing a letter, don't really know this is how you shake a hand."

He helps them with all those skills, with every aspect of their lives, and the reward is the moment when they finally walk the stage.

While Ortega and Sobieraski have never met, she understands what he dreams of every day, and she hopes he reaches a similar destination. Vivian Heverley, an administrative assistant in the athletics program at Daemen, worked alongside Sobieraski throughout the time that she studied for her master's.

"She's going places because she understands that life is precious," Heverley said. "God gave her a second chance to make a better world."

Sean Kirst is a columnist with The Buffalo News. Email him at skirst@buffnews.com or read more of his work in this archive.

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