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Home Is Haven to Disabled Children With No Hope of Recovery

August 06, 1989|ASHLEY DUNN | Times Staff Writer

Stephanie, a 6-year-old from San Bernardino County, fell into the family's pool three years ago and nearly drowned.

For most of the day, she lies in a crib, her limbs motionless and her eyes fixed on the ceiling. Her parents come to visit almost every day, but whether she recognizes them is anyone's guess.

Nearby, on a blanket printed with pastel birds, is James, a 1-year-old who was born without a brain. His skull is a wrinkled protrusion that stops a little above his eyebrows.

He can smile and cry, but nurses say he will never be able to do much more. He is fed through a tube in his stomach.

A nurse massaged his arms. "He won't make it to his teens," she said.

Most Difficult Cases

Stephanie and James are two patients at the Home of Angels in Ontario, a private nursing home that for 17 years has cared for the most difficult of difficult cases: children who have suffered disabilities so extreme that there is no hope of recovery.

It is one of the few facilities outside of state hospitals that provide care for the severely disabled, and it draws patients from throughout California and Nevada, although most are from Los Angeles, San Bernardino and Riverside counties.

"There may be no other place like it in the state," said Verlin Woolley of the Inland Regional Center, a state agency serving disabled people and finding appropriate facilities for them. "It's a rather unique facility."

The patients suffer from near drownings, birth defects caused by their parents' drug use, severe mental retardation, congenital deformities and a host of other ailments.

Only one patient, a 10-year-old girl named Susie, can walk or talk. The rest spend much of their time in wheelchairs or steel-barred cribs.

Mavis Moretta, the home's administrator, said the home, unlike other nursing facilities, doesn't concentrate on educating and counseling patients. Mostly it just tries to keep them comfortable and attend to their constant medical needs.

For some people, such as an aide who quit on her first day at work last month, seeing these children can be an overwhelming experience.

"It's too depressing for me," she said as she walked out of the building after three hours on the job.

But Barbara McCord, the home's director of nursing, said caring for the children has its rewards. There are no miracles, but occasional small gains: a garbled word or a fleeting moment of eye contact.

"Those are victories here," McCord said.

The Home of Angels was started in 1965 by the late Dr. Donald W. Fawcett, an Ontario obstetrician and pediatrician who opened a nursery for mentally retarded children when his failing eyesight forced him to curtail his practice. The home was no different from hundreds of other facilities in the state.

In 1972, it changed its mission: to care for only the most severely disabled, most of whom could not speak or walk.

After that, the sound of children's voices began to disappear from the buildings. The playground equipment outside was taken away.

Today, the facility cares for 59 patients. The state pays for their care, providing $52.62 a day for each.

Most of the patients are children, although a few are in their 20s and 30s. Some are transferred to a state hospital or another nursing home when they get older; many die before their teen-age years.

The list of ailments is long. Most suffer from varying degrees of physical deformity, mental retardation and respiratory problems.

"Those are your basic problems for just about all of them," McCord said.

Most patients see only the home's staff. Parents often find it too difficult to deal with their children's disabilities and rarely visit, Moretta said.

Miguel, who was born with no limbs or nose or upper lip, died last November when he was 6.

He came to the home when he was a week old. His mother visited him in the first few weeks, but never came again.

Timmy, 21, was born with a shrunken brain and is one of the home's oldest patients. He has lived there since he was an infant and has never had visitors.

McCord said one mother makes an hourlong commute every day to visit her 5-year-old son, Juan, who suffers from profound retardation.

The child cannot speak and has only a limited awareness of his mother. But each day his mother comes to play and talk. Sometimes she sings and plays patty-cake with him.

In the evening, she returns home to Los Angeles.

There are bright spots, however, at the Home of Angels.

The voice of Susie, who suffers from a rare and sometimes fatal skin disease called epidermolysis bullosa, pierces the hallways, where the sound of coughing or crying is the norm.

Susie's disease, which has no cure, has left her body covered with open sores and scarred tissue. Because of her disease, she must stay inside.

Moretta said there are times when Susie can be demanding, manipulative and petulant--the result of a life spent in an institution.

But she can also surprise people with her cheerfulness. "Want to know what type of medicine I get?" she bursts out to a visitor.

She wheels around the home on a plastic tricycle, dusting furniture and handing out checks on payday.

"I like it here," she said. "I just wish I could go outside."

Moretta said Susie came to the home soon after her birth and probably will never leave.

But there are a few who have gone home.

About five years ago, an Orange County boy was brought to the home after falling into a coma.

His father was a gardener, and doctors guessed the 4-year-old had swallowed an insecticide or some other garden chemical.

At first he was like many of the other patients, unable to move or respond to the people around him.

But each week, he got better. Nurses started teaching him to crawl again, then to walk, then to run.

Within six months, he had recovered and returned home to his family.

"It's the only time it's happened," Moretta said. "We still talk about it. For us, it was a miracle."

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