(CBS) — Unconscionable. That’s what a doctor calls a state decision to cut care funding for a patient.

The family believes it puts their son at risk. As CBS 2’s Brad Edwards shows in this original report, a young man’s once idyllic life in north suburban Northfield — is in limbo.

Patrick Stein was a water polo captain at Loyola Prep. On homecoming night 2010, he awoke with a terrible headache.

That headache was an aneurysm on his brain stem turned stroke.

“I feel like have my heart ripped out. It almost breaks you,” said Nick Stein, his father.

His diagnosis was locked in-syndrome and only has use of his eyes.

Patrick fell under a state waiver program for the sickest of the sick for in his case home nursing care.

“So someone has to be with him all the time,” said his nurse, Mary Jo Harte.

That’s now going to end.

“To not have skilled people take care for him for the bulk of a day puts his life at risk,” said Harte.

At issue — his tracheotomy. There’s no tube, therefore he doesn’t meet the protocol.

the state says look we’ve run the numbers and we’ve got to downgrade the care?

While the state says they have to downgrade his care, Harte says, “They’re wrong. There assessment is wrong.”

“We’re trying to be the family that doesn’t go bankruptcy to keep our private insurance,” said Colleen Stein, Patrick’s mom. “We keep trying but they’re wearing us out.”

I will get a call, ‘Can we talk to Patrick Stein?’ How out of touch can you get?” said Nick Stein.

“But giving up is not an option. I still have my mind,” Patrick Stein though a computer. “I’m asking the state not to quit on me.

There has been improvement in his condition, said the Department of Healthcare and Family Services said in a statement to CBS 2. He’s now “able to breathe on his own” and “As a result of these improvements in his condition, he is no longer eligible”

The family is appealing.

Brad Edwards