Story Keeper

April 2025

By Kim Gilmore Dunn

If you ask Rob Bellanich about his liver transplant, he will point you to his wife, Lezlee – his caregiver and the unofficial keeper of his story.

Lezlee goes to great lengths to preserve the bravery and selflessness that shine through in retelling not only her family’s journey, but also the stories of other organ donors and recipients and their families.

“I’m more of an extrovert than Rob,” said Lezlee, a mother, singer, songwriter, and all-around dynamo.

Moved by the joy and sacrifice of her husband’s lifesaving liver donation, Lezlee copes the only way she knows how — immersing herself in creativity.

Lezlee wrote a song about liver donation, published a book chronicling Rob’s battle with a rare autoimmune disorder, and talks openly about her husband’s decision to move from New York to Florida to increase his chances of receiving a liver transplant in time.

“I need storytelling,” Lezlee said. “Rob, he’s just living his life day to day.”

That was not always the case.

Rob, affectionately known as Captain Rob, dedicated years to growing the family business, NY Boat Charter. The Navy veteran served as the skipper while Lezlee organized weddings and corporate events aboard their ship in New York Harbor.

“I was totally fine for years,” Rob said.

Boating has always been their passion. On August 3, 2001, Rob and Lezlee were married aboard a yacht in the Upper New York Bay.

“He wore the captain’s uniform, and I played my guitar,” Lezlee recalled fondly.

Two years after they exchanged their wedding vows, Rob had a sinking feeling that something was wrong. Routine blood tests at a local VA hospital confirmed that he had primary sclerosing cholangitis (PSC).

“I couldn’t even pronounce it,” Lezlee said. “All I knew is that it was affecting his bile ducts in the liver causing inflammation over time, so we knew that there was no cure, and he would be on medication to slow down the process. However, he would eventually need a liver transplant.”

Rob spent two years on the waiting list in New York. As his condition continued to deteriorate, doctors advised him to seek a living donor.

“That’s not an easy ask,” Lezlee said, explaining that she could not donate to Rob because they have different blood types. Two others volunteered to donate, but neither was a match.

The situation became dire, and Rob was desperate. Jaundiced, fatigued, and confused, he was showing signs of liver failure.

Rob told his wife, “I’m going to die in New York, we have to move. If I want a liver transplant I need to go where they are doing the most of them.”

In October 2019, Rob left his family in Nyack with a friend and rented a condominium in St. Augustine, Fla., to be near the Mayo Clinic in Jacksonville where he got on the waiting list.

Before leaving his wife and children in New York, Rob had one incredibly tough task on his to-do list. He and Lezlee had kept his condition a secret from their kids for years, and now it was time to tell them the truth.

River was 15, and Skye was 11 when they first discovered their dad’s incurable, progressive autoimmune disorder and learned that he would need a liver transplant to survive.

“We hid it from them,” Lezlee said. “Rob fought through it. He always rallied. They didn’t think he was sick. They had a pretty normal childhood.”

Rob spent 11 months on the waiting list in Florida. Twice doctors called him in for a potential liver transplant, only to find that the donor organ was unsuitable both times. Lezlee and her children visited Rob in Florida during breaks and holidays. Then in March 2020, the Covid-19 pandemic hit.

“Rob said, Take the next flight out of New York’,” Lezlee recalled. “We were one of the only people on that airline. We experienced Covid in Florida. The world was depressed. I was depressed.”

At the time, Rob and Lezlee had no income. Their private yacht business was shut down due to the pandemic. River and Skye, now adolescents, were miserable being so far from their friends and family.

Feeling isolated and afraid, Lezlee turned to journaling to cope with boredom and stress. She invited other recipients at the Mayo Clinic to share their stories with her on Zoom. She was deeply moved by their eagerness to connect and their openness in sharing.

She compiled their stories in a manuscript.

“These people were so grateful to be alive, and I thought what if we could all be this way,” Lezlee said. “I felt inspired by these stories and thought maybe I could make a difference to people like me who were confused going into this transplant world.”

The support group offered Rob a safe space to share information and find hope.

“I wouldn’t be here today if it wasn’t for the support group at Mayo,” Rob said. “I really didn’t want to go on anymore.”

On September 10, 2020, Rob received his lifesaving liver transplant at Mayo Clinic in Jacksonville. In a letter from his donor’s family, Rob would later learn that a 23-year-old man named Damon had given him the Gift of Life.

“The guilt you feel and finding out it was from a young donor. You feel like you robbed somebody’s life,” Rob said. “Now five years later, I still wear a green Donate Life wristband for my donor, Damon. One day I hope to meet the family and meet his brothers.”

A year after Rob’s transplant, Lezlee’s manuscript came to life in the book, “Saved by a Stranger,” which not only chronicles Rob and Lezlee’s personal journey but also features inspiring survival stories from transplant patients and medical professionals. It also highlights various diseases that can lead to cirrhosis of the liver and emphasizes that alcohol consumption is not the sole cause of liver failure.

Lezlee also composed a song, “Be a Giver of Your Liver.” She passionately advocated at the Capitol in Albany, N.Y., and hosted the podcast series, ”Meet a Transplant Stranger,” all of which can be found on her website, www.Lezlee.com. She started an online petition to UNOS that garnered more than 11,000 signatures and resulted in exception points on MELD scores for PSC and PBC patients. A MELD (Model for End-Stage Liver Disease) score is a numerical system used to assess the severity of liver disease and determine the urgency of a patient’s need for a liver tranpslant.

“My blood type is B+, and I needed to be positive,” Lezlee said.

After Rob’s transplant, the family returned to New York but soon found themselves yearning for the Sunshine State. In 2023, they packed up and made St. Augustine their permanent home.

The couple now owns Jax Yacht Charter in Jacksonville and is currently overseeing the renovation of The Royal Princess, a vessel intended for dinner cruises, weddings, private and corporate events. They also plan to host Donate Life fund raisers and other events aboard the boat.

“We just feel like this is something we need to do because Jacksonville saved my life,” Rob said. “We want to give back.”

“As we get this enterprise off the ground, I’m still going to be Rob’s strong caregiver,” Lezlee said. “I am always trying to limit his stress.”

Lezlee’s experience highlights the essential role caregivers play in supporting organ transplant recipients, offering both physical and emotional care throughout the process. Their involvement is often crucial to ensuring successful outcomes.

“This is not the Lezlee show. Rob is the one who has gone through all of this,” she said. “I just feel grateful to Rob’s donor and that we got the liver.”