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More MS news articles for December 2002

One mother bears the burden of care

http://www.n-jcenter.com/2002/Dec/16/AREA2.htm

Monday, December 16, 2002
By Ray Weiss
Staff Writer
Holly Hill

Bonnie Bonilla has found a moment of peace from her daily storm.

Up since 4 a.m., she's seated alone at the dining-room table, head in hands. Lunchtime is approaching and there are dishes to wash and food to cook. Just hours earlier, there were baths to give and medication to dispense. And later, there will be laundry to do and dinners to prepare.

Sometime past midnight, Bonilla will finally go to bed. But she may not sleep. There are always emergencies, always demands.

"I do my best," she says, tears welling in her dark eyes. "But I'm very depressed because of this."

Bonilla, a 64-year-old divorcee, cannot escape the responsibilities or angst of caring for four grown children with multiple sclerosis. It is her burden as a mother -- her duty.

"They are my children," she says. "I have to take care of them. And I will."

Like a cruel game of human dominoes, she has watched them fall one by one, stricken by a disease that has slowly robbed them of their youth, health and independence.

Margaret, 45, was the first. Diagnosed 18 years ago, she is mostly confined to bed, except on the Sunday mornings she attends church. So is Angelo, 44, who has spent most of the last seven years secluded in his room.

On the other side of the house, Norma, 41, sits in a wheelchair in her dark bedroom, staring straight ahead with lifeless eyes. Jose, 37, while the most ambulatory, is the sickest. He's fighting four life-threatening diseases besides MS.

"Doctors have told me that to have four children with this is ridiculous," Bonilla says, shaking her head. "One, but not four."

Dr. Patricia O'Looney, director of biomedical research for the National Multiple Sclerosis Society in Manhattan, agrees that it's rare for the disease to strike a family so hard.

"You don't inherit the disease, but there is a predisposition, a genetic susceptibility," she says. "(Siblings) are at a higher risk than the general public. There's a 30-fold increase. But it certainly is not common to have so many cases."

Ultimately, something in each of their bodies triggered the disease.

"If it were totally genetic then identical twins would both get it 100 percent of the time," O'Looney says. "But we don't see that."

Meanwhile, life goes on in the Bonilla home. No one dwells on why or how they became ill. They simply are trying to survive.

Christmas decorations hang throughout the old five-bedroom house. But the atmosphere is anything but festive.

"It's like a little hospital," Bonilla laments.

But her patients don't leave. They are already home.

In addition to her children with MS, Bonilla takes care of another son, Ismael, 40, battling kidney disease, and a 45-year-old nephew with epilepsy. Three other grown children, all healthy, live in greater New York City, where Bonilla moved from seven years ago. So does the father.

"They're all sick, and they're all dying slowly," she says of her children with MS. "They don't get up or out. They don't even see the sun outside."

Bonilla receives very little help. A nurse drops by for 30 minutes five days a week to bathe Margaret, who must use a catheter. Bonilla says the others do not qualify for home nursing assistance.

"The rest of them, I clean myself," she says.

Bonilla also administers their daily injections of Copaxone, a drug that helps slow the progression of the disease.

"The one thing I got to assist me is TV," she says, managing a smile. "They watch all day."

When there's a medical emergency, Jose and the others go by ambulance to the Halifax Medical Center emergency room. They are on Medicaid.

The two men and two women with MS receive about $2,400 a month in financial assistance from the federal government. What's left after the $800 mortgage payment goes toward food, medicine and bills. Electricity can cost as much as $500. Three window air conditioners run nonstop, filtering impurities from the air.

"We have to keep them on for our breathing," Jose says.

Bonilla steps into Margaret's room and sits at the foot of the bed. But her thoughts turn to her other daughter.

"They wanted to put Norma in a nursing home. I don't want that," Bonilla says. "But I don't know what will happen if something happens to me."

That's a major concern for Margaret and her siblings. She wonders how much longer her mother can hold up physically and mentally.

"Sometimes I feel I want to die, for my mama. It's very difficult on her, having all of us sick children," Margaret says, her speech slow and slurred. "I've cried a lot, and she's cried a lot, too. If only she could get some help."

Jose, leaning on a cane, shakes his head.

"Her back and legs are shot. She's in pain from lifting them," he says of his mother. "Without her, I'd have to put them all in a nursing home. But for now, we are here, together."

"For better or worse," Bonilla says, looking up at her son.

About Multiple Sclerosis

Medical research indicates that heredity plays a big part in developing multiple sclerosis.

 © 2002 News-Journal Corporation