NEEDHAM, Mass. -- Joyce Edelstein, of Needham, will celebrate her 53rd birthday this Sunday, but she is not rejoicing.

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NewsCenter 5's Heather Unruh said that devastated by a terminal disease and inadequate insurance, Joyce Edelstein's home is filled with sadness and frustration.

Mike Edelstein just celebrated 30 years of marriage with his lifetime love, Joyce, but he never imagined they'd spend it like this.

Stricken with Lou Gherig's disease, or amyotrophic lateral sclerosis, she can't even move a finger, talk or breathe on her own. With her mind still sharp, she's trapped in a dying body.

"This is not her time to go. She wants to live, wants to see her kids develop and mature, keep tabs and give motherly advice," Michael Edelstein said.

Joyce Edelstein has insurance, but like most plans, it doesn't cover this kind of care. Her husband shells out $1,000 dollars a week plus more for supplies.

"Just the co-pays on her medications will run $150 to $250 a month," Michael Edelstein said.

Despite a small but successful optometry practice -- he's run out of money, and options.

"My father's been put in a position that nobody should ever be put into. We're trying to deal with an illness right now, and my father's trying to think about how he's going to pay for everything," Michael Edelstein's son, Scott, said.

Rep. Peter Koutoujian is vice chairman of the House Health Care Committee and said that the Edelsteins have fallen through the cracks, which is not uncommon among middle-class people.

"People that are wealthy can afford better health care plans or can afford their own health care if they have to pay privately. People that are poorer get more assistance from the state," Koutoujian said.

Despite Koutoujian's help, the Edelsteins have gotten nowhere.

"Right now, there is no solution to this problem. There is no solution," Michael Edelstein said.

Koutoujian continues to make phone calls on their behalf. His message to you is: Know your insurance -- especially long-term care coverage.

Koutoujian suggests you buy more than you think you'll ever need just in case something catastrophic like this happens.