ATCO, N.J. (WPVI) --A special machine keeps 66-year-old Joe Swider alive.
Swider of Atco, New Jersey, has ALS, a progressive disease that affects the nervous system.
He tells Action News he has a lot to live for.
"We have two boys, two girls, 11 grandkids in what, 12 years," said Swider.
He is paralyzed from the neck down and needs a ventilator.
A home nurse cares for Swider for 16 hours a day, seven days a week.
The care costs more than $4,000 a week, and it used to be paid by Swider's insurance through the local plumber's union.
"They call it 100 percent retiree medical. And what that means is, you're guaranteed your medical coverage for the rest of your life," said Swider.
But last year, the union changed insurance plans.
The Swider's got a notice stating their coverage wouldn't change. Still, Joe's wife, Donna, made a phone call and attended an info session about the new plan.
"She said, 'I'm just verifying that we still have the same nursing coverage.' And he said, 'No, there is no nursing coverage,' " said Joe Swider.
"It was a bombshell, I was not expecting that at all. Not after making those initial phone calls," said Donna Swider.
The Swider's took their case all the way to federal court.
Donna Swider says while the judge was sympathetic, he said no laws were broken.
We reached out to the attorney for the union, but so far have not received a response.
Meanwhile, the Swider's are now paying for nursing care out of pocket.
Donations from a GoFundMe page are helping, but once the money runs out, Joe Swider says he'll go into hospice, and let nature take its course.
"Our story's not over yet, but this is out of our hands and I don't know how it's going to end," said Donna Swider.
The GoFundMe page has raised more than $40,000 in a month, and Donna says many of the donations have come from complete strangers.
If you would like to make a donation, you can do so by clicking here.