By Lila Lazurus / Special to The Detroit News

One by one, Deneane Chiplock of Saginaw watched the disease take her relatives.

In all, 24 died of it. And for years, Deneane worried she would be next.

"When I was younger, they hid it from us," she says. "They never told the kids what was going on."

When she was 16, the same horrible illness took her mother. "I was the one yelling at her, 'Fight! Please do something.' I had this belief that if we loved her, if we loved her enough, if we fought hard enough, we could beat it."

But her family hasn't been able to beat amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.

The progressive and ultimately fatal neuromuscular disease destroys muscles little by little, affecting the ability to walk, talk, eat, even breath. And there's no cure.

"I watched the disease take the three most important women in my life," Deneane says.

All the while, she feared ALS would take her too. But she had no way to know for sure. She tried to just hope for the best.

She got married and had a son, Sean. Life was good. Then, when she was seven months pregnant with her second son, Evan, she learned researchers had discovered one of the defective genes that leads to ALS.

"I had my blood Fed-Exed to them the next day for the confirmation test," she says.

The news was crushing. She, too, has the defective gene.

"The very first overwhelming gut-wrenching emotion I had was 'Oh my God, what have I done? What have I done to Sean and Evan?' Because I knew if I had the gene, that there was a 50/50 chance they could have inherited it, and I didn't want them living with that cloud."

Her boys are now 14 and 10. They face a future without their mom and an uncertainty about their own health. They have not yet been tested.

Through tears, Deneane talks about the calendar. She's already lost most of the ability to move her legs and right arm. Her breathing is affected. She knows her days are limited.

"My fear is probably by February at the latest," she says.

All of this has been painful and frightening for her husband, Jerry. "I can't imagine my life without her," he says. "I can't imagine our boys being without her. I can't imagine the world being without her."

After 16 years of marriage, Jerry isn't leaving his wife's side. "He would wrap his arms around me and say, 'You're not going anywhere. I love you too much,' " Deneane says. " 'I will keep you safe because I love you that much.' "

Even now, Deneane remains feisty and passionate. She flat out refuses to go without a fight. She's taking a drug called Rocephin, an antibiotic usually used to treat meningitis. It's also of the most promising experimental treatments for slowing the progress of ALS.

"I'm still talking. I'm still chewing. I'm still swallowing," she says. "I'm still using my left hand, although it's weaker. None of this was supposed to be possible in November of 2004."

The disease isn't just taking over her body, it's also taken over the family's finances. The Chiplocks were stunned by the costs of her medication and the amounts that are not covered by insurance. The drug that doctors believe is keeping her alive costs nearly $9,000 per month. Nursing care will cost even more.

"This is going to devastate us," Jerry says. "Our expenses are mounting at a rate we can't even conceive of at this point."

Deneane is frustrated and angry. "Medicare will cover approximately $6,000 a month in the Saginaw area for me to linger and die in a nursing home, they will not give me one dollar towards nursing care within my own home," she says.

Changing the system is now Deneane's dying wish. She's already met with U.S. Sens. Carl Levin, Debbie Stabenow and Hillary Clinton. She wants to use the strength she still has to get lawmakers to make changes for terminally ill patients.

"I'm just another dying-person story," Deneane says. "I'm not famous. I'm not important. And I don't know how to get this message heard. Thousands of people would benefit from this change -- not just ALS patients, but also Alzheimer's, Parkinson's, advanced MS patients, end-stage cancer patients."

It's a legacy her family wishes she didn't have to leave.