End of Their Rope : Family of Boy Dying From Rare Disease Faces Eviction

A dying boy and his family, who moved to Southern California last year to be near the only hospital that offered hope of prolonging his life, are being evicted from their San Dimas apartment on grounds that they have become a “nuisance.”

Barry Haney, a truck driver for Jerseymaid Milk, said he received a three-day eviction notice on Monday alleging that he was “staring (at) and watching” the apartment’s manager, taking photographs of her children and making verbal threats.

Haney, who denies the charges, said he fears that uprooting his son from his school, friends and karate class will speed the boy’s decline from two rare and incurable genetic diseases he is being treated for at the City of Hope Medical Center in Duarte.

Chuckie Haney, a plucky 11-year-old whose struggle has touched the hearts of movie stars and President Reagan, suffers from adrenoleukodystrophy (ALD), a fatal disease that attacks the brain and nervous system, and Tourette’s syndrome, a non-fatal genetic disorder characterized by bizarre behavior that often isolates its victims from society.

Haney said Chuckie blames himself for the eviction, believing that his diseases have created a fear among some residents of the apartment complex. “He thinks the eviction is his fault,” Haney said. “He wakes up at night and can’t see. He’s overwrought.”

Sheriff’s deputies, who investigated the matter and found no evidence to support the apartment manager’s allegations, said it was likely that misunderstanding surrounding the boy’s condition was behind the eviction notice.

Haney said he wants to fight the eviction and has contacted more than a dozen attorneys, but none so far would take the case without a retainer of at least $1,200. Haney said his family lives from paycheck to paycheck, his savings depleted by the cost of his son’s care.

“I don’t know where we’ll go,” Haney said. “I couldn’t begin to afford to put down a security deposit on another apartment. And who would take us with a bad reference from this place?”

The manager of the apartments, Kathy Egan, refused to discuss the matter. She referred all questions to the owner, John Konwiser. Contacted at his Newport Beach office, Konwiser said: “The eviction is between the Haneys, myself and my company. That’s all I’m going to say.”

In late 1984, Haney left his family in Chicago and headed west in search of a new home and job near the City of Hope Medical Center in Duarte, which was doing research on both ALD and Tourette’s syndrome and was located in a warm climate, two factors that he was told might extend his son’s life.

Haney slept in the back of his truck for two months before getting a job and moving his wife, Sue, and their three children to San Dimas last year. Because of the mystery shrouding the boy’s diseases, which cause uncontrollable tics and eye movements, and the mistaken fear that they are communicable, it was important to find a school that would accept him, Haney said.

“In Chicago, we moved Chuckie from one school to the next. They all wanted us to hire a tutor and make him home-bound, to cut him off from society,” Haney said. “But the Bonita school district has made Chuckie feel special. At his school, they’ve showed films about his two diseases so the students would understand his behavior. He’s like the school mascot.”

Dr. David Cummings, a geneticist at the City of Hope who oversees Chuckie’s care, said moving him away from his friends and familiar surroundings could have an adverse physical effect on the boy.

“When Chuckie gets emotional, it makes everything worse--the tics, the deterioration of his motor skills and the intermittent blindness,” Cummings said. “It puts him in some danger.”

Haney said he had a run-in with the manager of his apartment complex, The Daisy, two months ago over the treatment of Chuckie and Haney’s two daughters, Jackie, 9, and Susan, 7.

“Her husband was harassing the kids. He was making fun of Chuckie, mimicking his tics,” Haney said. “I told him to leave my kids alone. He threatened to have us evicted.

“I’ve avoided a confrontation for that very reason. I can’t afford to move anymore. I know that.”

Haney denied verbally threatening the manager or photographing her children. He said the accusation that he stares at the manager’s children probably resulted from a misinterpretation of his habit of watching over Chuckie as he plays. Egan refused to comment on Haney’s charge that her husband harassed the Haney children.

Several residents interviewed said the Haneys were excellent neighbors and tenants. They said that the boy’s medication sometimes made him aggressive, but that most residents of the complex were aware of his condition and were understanding of the situation.

Cummings said the chances of a person having both ALD and Tourette’s syndrome, which are unrelated diseases, are less than “one in millions.” There are only 300 known cases of ALD in the world, a progressive disease of the nervous system that robs its victims of their sight, hearing and coordination before it destroys portions of the brain and leads to death. Chuckie has already lived two years longer than his doctors predicted.

Stories about Chuckie’s plight and his dreams of being a police officer have been carried by news services. He has been made an honorary member of the police departments in several cities, including San Francisco and Monterey Park.

President Reagan has written him twice, once naming him an honorary member of the Secret Service and once sending him wooden Easter eggs that had graced the White House lawn. Several TV actors, including Michael Landon and Emma Samms, of “The Colbys,” have invited him to visit the sets of their shows.