'He Wanted To Leave The World Better Than He Found It:' Farmingdale Family Grieves Loss Of Husband, Father

FARMINGDALE, NY — Debra Gruda and her children from Farmingdale recently lost their husband and father, Jonah, to cholangiocarcinoma, a rare and aggressive bile duct cancer. Deb is channeling her grief into action with 'Because Jonah Would.'

She has begun working closely with the Cholangiocarcinoma Foundation and launched a year-round charitable effort to fund research grants and support others.

At the end of the month on Jan. 24, Deb is hosting a Long Island benefit at Mulcahy's in Wantagh to raise money for research and honor Jonah's legacy of kindness and community support. There will be an open bar, raffles, and silent auction items. Their goal is to raise the $85,000 needed to pay for a research grant, which would be awarded to a researcher in May. Details about the benefit and how to donate can be found online.

The young family, Deb and three children, have felt the absence of Jonah– Deb shared Jonah's story.

Jonah was 43 years old when he was diagnosed with Cholangiocarcinoma on September 21, 2023. This was also the same day as the Farmingdale bus crash, so Deb said it was a "date ingrained in our lives, unfortunately, a day that we won't forget."

Cholangiocarcinoma is the second most common liver cancer in the world and the third deadliest cancer in the U.S., according to the National Library of Medicine. Cholangiocarcinoma forms in the bile ducts and can span from the liver to the small intestine, according to the Cholangiocarcinoma Foundation. There are about 8,000 cases diagnosed in the U.S. every year, according to the American Cancer Society, but Deb said the number could be higher because people are often misdiagnosed. It's most often seen in patients in their 70s in the U.S., according to the ACS.

Jonah was diagnosed with ulcerative colitis when he was about 19 or 20 years old. After his death, Deb found a medical record from 2002 that showed in the report that it was suspected he had Primary Sclerosing Cholangitis (PSC), which is inflammation of the bile duct, and there is no treatment. There is no cure, Deb said. PSC can develop into cholangiocarcinoma. The primary care physician at the time didn't share the record with them, and at the time, patients couldn't access their own labs online, Deb said.

At that time, his liver numbers were always off the charts, and no one said anything either, Deb said.

Leading into that September of 2023, Deb said Jonah was having a lot of stomach pain and had to move up an appointment with a gastroenterologist because of the pain. After doing the bloodwork, the new gastroenterologist immediately shared that they needed to run more tests and bloodwork.

"They found a six and a half centimeter mass," Deb said. "Meaning, it's been growing. It's been there for a while."

They had the mass biopsied and confirmed the diagnosis of cholangiocarcinoma. They also found a mild hiatal hernia, which could have been the primary cause of the discomfort, Deb said.

After he was diagnosed, they began to see oncologists at Memorial Sloane Kettering and were connected with a cancer advocate, Steve Kandell.

"He doesn't charge you for it," she said. "He does this out of the goodness of his heart. He wants to make sure people get connected to the right cancer care."

The family's routine was put on hold– flights and hotels were booked.

"And so he started treatment," Deb said. "His chemo schedule was two weeks on, one week off, and a combination of two chemo drugs and immunotherapy."

Jonah followed the treatment schedule through February of 2024, and then he had to go off chemotherapy for a month to prepare for surgery. They did a liver resection at MD Anderson Cancer Center. They removed half of his liver, his gallbladder, and 13 tumors that were in his peritoneum. It was a 10-hour surgery. They spent three weeks down there– Jonah spent his 44th birthday recovering at MD Anderson.

"He was able to graduate to eating scrambled eggs for his birthday," she said. "That was the most exciting thing that happened that day."

The doctors at MD Anderson had told them that by having this surgery, it was Jonah's greatest chance of survival.

"I think it definitely did buy us some time with him," Deb said.

Shortly after he was diagnosed, Jonah reached out to the Cholangiocarcinoma Foundation and received a mentor, someone else who was living with the same cancer. After three months, he said he was ready to be a mentor. He wanted to help other people who were newly diagnosed and living with it as well.

"He wanted to give back," Deb said.

Reflecting on what a doctor at NYU Langone told her, some people can live with cholangiocarcinoma for years, and others, unfortunately, cannot.

"You have to start thinking of your life more in years instead of decades," she said. "That was not a way that we wanted to live at all. We needed to find a way to get decades, not years."

From the time Jonah was diagnosed to when he passed on June 30, 2025, it had been less than two years: "I lived a lifetime in those two years."

"Jonah was someone who wanted to live. He had things that he wanted to do. We traveled whenever we could. We were there for our kids. He worked until the day he died, literally until the day he died."

She shared that on the morning of his death, he knew that he was dying. He couldn't project his voice anymore, and he had a client send him a text about trying to get time on the calendar.

"Jonah whispered into his talk-to-text, 'Let me check my calendar and get back to you,'" she said. "I looked at him afterwards. It took me weeks to write back to the person to tell them."

Deb is sharing his message with the world and hoping to make a positive difference in the cholangiocarcinoma community, 'because Jonah would.'

"He was not ready," Deb said. "He was not ready to die. He wanted to leave the world better than he found it. He always talked about being present and doing things for others. That's the legacy that we want to keep going."

People shared stories with Deb about Jonah– all the wonderful things he would do to help, from checking up on a client as an accountant, to trying to lessen the load on others who were struggling, to saying something funny to lighten the mood, to always being there for friends, family, colleagues and clients.

"That was where we came up with the idea," Deb shared. "People would say they now do things because Jonah would have done this. Because Jonah would. We want to honor his legacy. It's not always about big things that we can do. Sometimes it's these little things that make such a huge difference."

Their oldest son is 15 years old, and his teacher from last year reached out to Deb after Jonah's passing.

"She said to me, 'You're doing such a great job,'" Deb began. "'He's such a good kid. He's not even in my class anymore, but he comes over and checks and says 'hello' to me every day, and it always brightens my day.' It was just one of those little things that we can do for each other that makes such a big difference."

Thinking about the path ahead, Deb's goal is to raise money for a research grant. She has been in touch with the Foundation. They give out 10 research grants a year, and at the conference, she will meet the researchers who are going to receive the money that is going to fund their year of research. She said she will be able to talk to the people who are going to research more into this form of cancer.

Deb said there can be a connection for someone who has ulcerative colitis to PSC to cholangiocarcinoma.

"Like for me as a mom, what's scary is, our son, Jacob, was diagnosed with Crohn's a few years ago," she said. "It puts him at a higher risk for these things. The selfish part of me is that I want research, because I want to know what we could do if Jacob starts having any of these problems. I want there to be resources for my kid. That's the parent in me."

"He was able to graduate to eating scrambled eggs for his birthday," she said. "That was the most exciting thing that happened that day."

He was supposed to have 45 rounds of chemotherapy, and he had 41 of them, as considered frontline treatment.

"Not many people can last 41 cycles of chemotherapy," she said. "The doctors were kind of floored. Some patients just can't tolerate it anymore. He knew the nurses by name at MSK. He would bring them donuts every time, sometimes bagels. We would have chemo parties. We became friends with other people who were having chemo."

One day, there was a woman crying, and Jonah walked over to her husband to ask if she was okay. The husband told him that she was diagnosed with a rare cancer: cholangiocarcinoma. Jonah told him, "Me too."

"He became good friends with her," Deb said. "She was older than us and became like a mother figure. They were on the same chemo schedule. They supported each other. He found a way to make chemo not miserable. It was a weird thing because, to some degree, you looked forward to it because then we would see our friend. Chemo was chemo. Mondays were always a very interesting day."

He was always trying to lighten the mood and make the best of a situation like these.

Their community stepped up when the family needed it. When Deb and Jonah were in Texas for three weeks, their kids stayed in New York, and family came to stay with the kids and help create normalcy. Their friends also stepped in to bring the children to places they needed to be.

"You learn a lot about people when you're going through a difficult time," she said. "There were some friends who really stepped it up and were essential to our village. And there were some people who pulled away because it was just too much for them, and it's not saying that they're a bad person or bad friend.

Deb shared that she was thankful for her Farmingdale community and loved ones, sharing that Jonah's uncle is a special person.

"We have a wonderful village," she said. "It's not an easy thing to drop your life to help out. Jonah was supposed to take my oldest to a Mets game. They had tickets, but we had to go to an urgent care in the city. Uncle Lester lives in Florida and said he would get on the 6 a.m. flight. 'I'll be there at the hospital, and then I'll take him to the game.'

Continuing with their support, she said her children have been surrounded by love.

"The schools were amazing. Our friends were amazing. The two boys were at camp when Jonah passed away, and the camp and their camp friends were amazing. My kids are having a hard time, but teachers have been understanding."

Details about the Cholangiocarcinoma Foundation's year-round charitable effort to fund research grants can be found online , and the foundation has shared a page to collect donations in honor of Jonah. Deb also created a website for 'Because Jonah Would.'

"Research is so important," she said. "Rare cancers are underfunded. We need more awareness and advocacy for rare cancers."