IN THE EVENING, after a long day of work, after feeding the children, after cleaning the dishes, Cynthia "Cindy" Walters prepared to bathe daughter Candy while her son Wayne Jr. waited in the next room. Candy is 20. She has lost her mobility and much of her mind. Wayne is 26. He is on his way to his sister's fate.
At moments such as this, Cindy Walters assures herself that God still cares. But, in her exhaustion and her anxiety, and her immeasurable sadness, the days are a series of ordeals. Her children have Huntington's disease, a hereditary brain disorder that causes progressive physical, emotional and cognitive deterioration. It leads to severe incapacitation, dementia if the victim lives long enough and death. It has already claimed her husband Wayne.
"If there's anything merciful about the disease," Walters said last week, "it's that they don't understand what they've lost. My daughter has become more childlike, more willful and has the perspective of an elementary school girl now. When she was a child, she wanted to become a doctor. Then, by the time she reached 17, she dropped to a second-grade level intellectually. Now she's looking at a year or two before she dies."
Walters says these words in the flat tones of one who feels defeated. Her children inherited the disease from their father. Wayne Walters was a construction worker, 6 foot 2 inches tall, 250 pounds, who lost half his weight and much of his humanity before he died in 1993.
"He would be fine one minute and a raving maniac the next," his widow remembers, "and crying like a baby the minute after that." He spent the last seven years of his life in a nursing home.
When Cindy married Wayne, she had no idea what was coming. Nor did he. His mother had been in a nursing home from the time Wayne was a child. The family thought she had Parkinson's disease. Wayne was raised in foster homes. He was one of seven children, of whom four have now died of Huntington's disease.
Last week, Cindy Walters sat in a Towson title company office and filled out papers for a second mortgage on her home. Bills are unpaid. She is a program analyst for the U.S. Department of Agriculture. The job does not pay enough for full-time care for her daughter, nor does Cindy's health-care coverage or her daughter's Medicare coverage pay for the constant care she needs. She is falling deeper into a bottomless financial hole.
Because Candy was symptomatic as a child - she was 13 when doctors learned she had Huntington's - she receives Social Security disability payments. But she needs help walking, eating, taking a bath. She is vulnerable to choking on food; she is losing her ability to swallow. Sometimes she needs a breathing tube.
"So I have a choice to make between reporting to work or caring for my dependent children," says Walters. The choice is this: For now, her son Wayne watches her daughter Candy. And Wayne is struggling with his own symptoms.
"His symptoms aren't as pronounced as Candy's yet, but his motor skills are deteriorating," his mother says. "He falls sometimes. He has a tough time with speech most of the time. His hands shake badly. It comes and goes with him. It's like a cloud that comes and goes. As it progresses, the bad times get worse until they're constant."
Wayne has no insurance coverage. He was diagnosed a year ago, at 25. He had been dropped from his mother's insurance policy when he reached 19, and cannot be put back on.
When he was 14, his mother says, "He realized that this was a potential for his life. He'd seen what his father went through. So he's had emotional problems, depression and substance abuse. Now he can't even hold a menial job. And he's the one I have to depend on so I can go to work and support everybody."
Walters has sent letters to Maryland's U.S. senators, her congressman and state legislators. She wants them to understand - not just her case, but the plight of all those faced with this disease, and the struggle to take care of their families, and the endless maze of health care providers who seem utterly unresponsive to her letters, telephone calls and all manner of pleas.
"When I first learned about my husband," Walters remembers, "I had two small children. I was told my husband was going to die. I just remember thinking, I don't have time to be afraid. When my daughter was diagnosed, I became a zombie. I worked, I took care of the kids, but the world just kind of stopped.
"I'm lucky: I have caring, supportive people around me at work. I'd sit in my boss's office and just cry. They've all been very sensitive. But you have to find strength inside yourself. I know God doesn't want people to suffer. If I have to lose my children, maybe somebody will hear about this and change something for somebody else. There are thousands of people like me, just trying to survive. And the system isn't set up to help us."
At the end of a long day, in the midst of terribly trying years, Cindy Walters' voice is full of exhaustion.
"Everybody in the world has difficulties," she says. "Some are just different. My worst nightmares have come true. The only things I ever wanted, a marriage and a family, have disintegrated in front of my eyes. There's a reason why things happen. Maybe my story can help somebody else."