‘This nameless person has given me a chance to live’

Sparta. The Sussex/Warren Donate Life Group raises awareness about organ donations by telling breathtaking stories of true love and amazing beneficence.

Sparta /
| 11 Jun 2021 | 04:05

Daniel Sarnowski and Betsy Niles were an internet dating success story. Although they discussed marriage, “We decided, ‘Why ruin a good thing?’” Sarnowski said. “We often referred to each other as ‘BTH’ and ‘BTW’ (better than a husband, better than a wife). We had a fully committed relationship for 10 years, and those years were the best years of my life.”

On March 30, 2011, Niles was walking to the train station in Upper Montclair, where they lived together. She was crossing an entrance to the train station parking lot when she was struck by a van. The driver had been blinded by the sun as he pulled in.

“He never saw Betsy, and she never saw him,” Sarnowski said.

Niles was taken to St. Joseph’s Hospital in Paterson, where they conducted emergency brain surgery. But the major damage that had been done could not be undone.

Niles was placed on life support in the intensive care unit to await the arrival of family and friends. Once they learned her prognosis was terminal, Sarnowski said, they were approached by an “angel,” Paula Gutierrez, a transplant coordinator from the New Jersey Sharing Network.

Ali Niles, Betsy’s daughter, brought up the subject of organ donation. Gutierrez worked with the family for the next 24 hours to enable Niles to become a donor.

This was Sarnowski’s impetus to immerse himself in New Jersey Sharing Network, and over the years, he’s served many roles within it. When Kelly Bonventre, the Sharing Network’s manager of community services, approached him about forming a Sussex/Warren group of volunteers, he was ready to help.

“I was eager to get it going with her,” Sarnowski said. “During Covid, all of our local activities were suspended, but we did have periodic Zoom meetings to share what was going on at NJSN and just to check that we were all doing well during the pandemic.”

Waiting for the call

Since June 1988, the non-profit Sharing Network has been central to the recovery and placement of donated organs and tissue for those in need of life-saving transplants. Imagine the feeling of guarded hope, suspense, and excitement, all at the same time —that’s how transplant patients feel waiting for the phone call that can save their life.

“There are currently 110,000 people on the transplant wait list, 4,000 people in New Jersey, and we lose 17 people a day waiting,” Bonventre said. “So awareness is key to helping us save lives.”

When Sarnowski moved to Sparta in 2015, he was already involved in several arenas of the Sharing Network to honor the life of Betsy Niles. He was instrumental in creating the Sussex/Warren Donate Life Group in 2016, a group that includes local transplant recipients, donor families, living donors, Sharing Network board members, and community advocates.

“The Sussex/Warren DLG has participated in countless activities to raise awareness about the importance of organ and tissue donation,” said Bonventre.

Bonventre joined the Sharing Network in 2015 as part of the foundation then continued her journey as a hospital services manager, developing and maintaining the partnership between the Sharing Network and Atlantic Health. In her new role, she will manage communications and public education along with the Sussex/Warren Donate Life Group.

“Members of this group have hosted table displays at various events, including National Healthcare Decisions Day at Newton Medical Center, Sparta Day, concerts at Newton Theater and the Sparta Farmers Market,” Bonventre said.

The group has presented educational programs on donation at various high schools, civic association meetings, businesses, and churches throughout Sussex and Warren counties. Over the past five years, the Sussex/Warren DLG has received proclamations from Sparta, Newton, and Branchville Townships in honor of Donate Life Month. Volunteers have participated in ribbon hanging campaigns, putting up blue and green ribbons throughout Newton, Sparta, and Branchville to raise awareness.

‘Why wouldn’t I try to help someone if I could?’

Sharon Marino became involved with the New Jersey Sharing Network in 2016. Her son Nicholas had recently died.

“Nicholas was on the wait list for a shoulder surgery where he was waiting for a donor bone to be a close match to what he needed,” she said. “It was early December in 2015, and every day we waited for the phone call which would take us to New York for his surgery.”

One day, Nicholas told Marino about the great pain he was suffering and that he couldn’t wait to get his surgery.

“I told him we shouldn’t wish for the call in December because it meant that a family would be grieving during Christmas time, which is the worst time to lose someone,” Marino said. “He agreed 100 percent and said, ‘Then I hope it’s in January after the holiday.’ He then asked me if I was an organ donor, which I replied that I was not. He told me that he had been an organ donor since he got his driver’s license. This was news to me.

“Nicholas’s exact words to his mother were, ‘Why wouldn’t I want to help someone if I could. If something happened to me or you, what would we do with our organs anyway?’” Marino said. “That was Nicholas, always thinking of others.”

The phone call never came. Nicholas died three weeks later — three days before Christmas — due to an unexpected accident.

“Knowing this was Nicholas’ wish if something should ever happen, he became our Christmas angel on December 22, saving five people that we never knew, but now have become family,” Marino said.

That June, Marino participated in the Sharing Network’s annual 5K with her family. Every year since her team has grown, and now includes two of Nicholas’ five organ recipients.

Marino honors her son by volunteering and participating as much as possible with Sharing Network, and is a proud member of the Sussex/Warren group of volunteers.

“My family and I put up ribbons throughout the town with postcards explaining the importance of organ donation,” she said. “I meet so many special people as we put up ribbons, asking what they were for. It was extra special to raise awareness for such a special cause close to my heart.”

Allison Ognibene has been involved with the Sussex/Warren Donate Life group from the start.

“I had a heart and double lung transplant on March 30, 1988, and am one of the longest-living heart/double lung transplants in the world,” she said. “I don’t know anybody else longer living than I am. I used to get followed up by the University of Pittsburgh, the hospital where I received my transplant, then followed by the University of Maryland.”

For the past 10 years, she has had follow-ups with Morristown Medical Center.

“They have reputable heart success doctors, nurse practitioners, and a fabulous staff that I see twice a year,” Ognibene said. “I do get heart catheterizations and pulmonary function tests, and they measure how I am doing physically.”

She has never met her donor family but has always wanted to. She continues to reach out to try to find them.

“Personally, my donor is my best friend,” she said. “This nameless person has given me a chance to live the best life I can. I am forever grateful, and I try to experience so much to honor my donor.”

During Covid, Ognibene stayed active with the Sussex/Warren volunteers by telling her story on social medial and by putting the Donate Life banner on her Facebook page.

She said her two favorite projects as part of the Sharing Network’s Sussex/Warren volunteers is hanging of ribbons every April and going to schools to share her story with students.

For further information about joining the Sussex/Warren Donate Life Group or becoming a donor, email Kelly Bonventre at Kbonventre@NJSharingNetwork.org.

“Personally, my donor is my best friend. This nameless person has given me a chance to live the best life I can. I am forever grateful and I try to experience so much to honor my donor.” Allison Ognibene