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After four years in the hospital, Mike Stanzione is going home.
A rare disease left him dependent on a ventilator, barely able to walk and in need of constant medical care. He was told over and over again he had no chance of leaving Bergen Regional Medical Center and getting home to his wife and young son.
Yet the 53-year-old refused to give up.
Armed with his cellphone and laptop, he found a doctor willing to try a groundbreaking surgery. It required a harrowing ride to Florida and back and a painful recovery and rehab.
And today, he'll finally rejoin his family at his Saddle Brook home, where friends and neighbors are expected to be on hand to welcome him back.
"I'm happy I didn't give up," Stanzione said. "I just wasn't going to accept being on a vent and in the hospital for the rest of my life — I heard about the diaphragm pacemaker and went after it."
Stanzione has Pompe disease, an often fatal genetic illness that causes degeneration of muscles, including those that control the diaphragm for breathing. He is the first Pompe patient to get a diaphragm pacemaker, which stimulates the muscles and nerves in his chest so he can breathe periodically — sometimes for hours — without a ventilator.
It was the ventilator that shackled him for years to a hospital room at Bergen Regional in Paramus. The machine requires a medical professional be on hand around the clock in the event it malfunctions or the patient needs assistance.
Stanzione's insurance company, Aetna, and Medicaid and Medicare refused to cover home health care costs. It appeared the former computer programmer would have to spend the rest of his life in a long-term-care facility.
Birthdays, holidays and seasons came and went. His son, Brian, who was 4 when Stanzione was first hospitalized, is now 8. They used Skype daily and tossed a ball on weekend visits at the hospital, but it didn't come close to watching his son grow and change every day.
"The hardest part has been being away from Brian," Stanzione said. "I missed so much. I just want to be home with him — I used to read to him every night, now he can read to me."
His wife, Debbie, admitted she and Brian had resigned themselves to the idea that her husband would spend the rest of his life in a hospital room.
"I never admitted it to him, but after a while we really didn't think he'd ever be able to come home," Debbie Stanzione said. "It was hardest on Brian — he's had his hopes dashed so many times."
But Mike Stanzione refused to accept that this would be his life. He had once been an active husband who played ball on weekends with his friends. He searched for a way home.
