Steve Centi, former Jamestown development director and owner of the Landmark Restaurant, has been suffering from a rare nerve disease. The family has started a GoFundMe to help pay for medical costs. Submitted photo

Steve Centi, the city’s former development director and owner of the Landmark Restaurant, was diagnosed back in December with a very rare nerve disease.

The Miller Fisher version of Guillain Barre Syndrome is an extreme version of Guillain Barre Syndrome, which paralyzes the affected person from head to toe.

Pati Centi said this all began for them back on Dec. 12.

“He came to pick me up at our restaurant, the Landmark, and on the drive home he said his vision was blurry and he was seeing double,” Centi said. “The next morning he couldn’t open his eyes and we took him to the emergency room.”

Centi praised the doctors at UPMC Chautauqua for being thorough with their examinations. She said they thought at first it was a stroke but realized there was something more going on. Steve Centi was moved to UPMC Hamot in Erie, Pa., two days later. Since December, he has spent time between hospitals, specifically Hamot, Select, a respiratory specialist hospital, and LECOM.

“With this syndrome, two viruses attack the body at the same time,” Centi said. “It causes the body to attack itself instead of the viruses because it gets confused. Steve spent four months in a coma because all of his body was paralyzed except for the heart, and they had to put a pacemaker in because the heart started to struggle too.”

Centi said if the person survives the first wave of the disease it then becomes a waiting game. When they survive, the body slowly starts to grow back, though a lot of muscle mass is lost. Centi said Steve’s ability to move his hands and feet is slowly coming back, and recently he has been able to talk and swallow again, though he remains on a ventilator.

“It’s been 10 months and his body has started to grow back a bit about the heart, so he can move his shoulders but not his arms,” his wife said. “He still has a long road ahead, and it is pretty much a waiting game. Because it’s a rare disease, there’s not much research you can do because it affects different people at different times. It’s not an old person’s disease or anything.”

Pati Centi said the disease has started to be seen more after the COVID-19 pandemic, but there is no proof that it is related to COVID or the vaccine. Steve remains on a ventilator at LECOM right now because he is still struggling to breathe on his own, but Centi said he is getting better.

When someone is on a ventilator, Centi said it is hard to know whether to bring them home or let them stay in the hospital. Because of how long it’s been, the Centi’s insurance has now run out and they are left to figure out how to continue paying. Centi’s daughter Katie Centi recently started a GoFundMe.

“My daughter started it after I sat down with her last month so she knew what was going on,” Centi said. “The insurance has run out because with insurance everything is on a timeline and it has been a long time, so we used up all of that time.”

Centi and her daughter discussed options, including now having to pay the hospital the full amount and whether or not to bring her husband home. It was after that that Katie Centi started the fundraiser.

“It’s so moving to see people from all aspects of my life sending notes and prayers and help,” Centi said. “It’s wonderful. The key thing is to keep Steve in your thoughts. He is going to get better and that is something to hold on to.”

Pati Centi added that she is grateful for all of the people who have reached out to help over the last few months, saying never to take anything for granted.

“You go through life and one day you wake up and suddenly everything can be different,” Centi said. “Never take anything for granted because you never know what the next day will bring.”

The Go Fund Me for the Centi family can be found at https://www.gofundme.com/f/steve-and-family-with-continued-medical-care?utm–campaign=p–lico+share-sheet&utm–medium=copy–link&utm–source=customer.