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Questions haunt Spring Hill couple after son's death in Gainesville

WEEKI WACHEE

By the time James Graziano turned 15, he had become a prisoner to his urges, and his parents needed help.

Born with a genetic disorder called Prader-Willi syndrome, James wanted food all the time. His parents, Salvatore and Sandra, had been forced to wrap chains around the handles of their refrigerator and install locks on the kitchen cabinets.

Despite those efforts, James weighed nearly 300 pounds by the time he turned 13.

And he had another dangerous compulsion: He wandered. The Grazianos would take their eyes off their son for a few minutes and he would be out the door of their Spring Hill home.

"We gave ourselves five minutes to look for him and then we called 911," recalls Mrs. Graziano, 58.

Like many Prader-Willi patients, James had a moderate intellectual disability. He could read and write, but probably would never be able to live on his own.

At about the time most teens are starting to get excited about a driver's license, James arrived at a Gainesville group home run by Arc of Alachua County, a private, not-for-profit organization that specializes in providing services to clients with disabilities.

There, his parents figured, he could be with other people with Prader-Willi, and the staff would watch his diet and his whereabouts.

Things went well for about seven years. Then, on the night of Aug. 4, James walked out of the house on SW 75th Street. He was about a half-mile away when he stepped off the shoulder and into the path of a Nissan Versa, according to the Florida Highway Patrol. He was taken to the hospital in critical condition.

A week later, the Grazianos decided to take James off life support. He was 23.

Now a state agency is investigating the Arc home, which has a history of service calls for missing persons. The Grazianos, who live in Weeki Wachee, say the facility that served James well for so long ultimately failed him.

"This is why we put him in a group home, because we couldn't watch him and keep him from running away," said Mr. Graziano, 57. "We were told they were watched 24/7."

Richard Bradley, Arc of Alachua's executive director, declined to comment to the Tampa Bay Times beyond a written statement.

"A comprehensive investigation has been and is currently underway to ascertain the facts of the incident," the statement said. "We wish (the Grazianos) comfort and solace and express our condolences while knowing that nothing we say or do can alleviate their grief and pain. We also grieve as we have known and cared for James Graziano for the last seven years."

• • •

The Grazianos sat on the porch of their modest ranch home last week and recalled the joys and pains of raising a son with Prader-Willi.

Doctors knew something was wrong shortly after James was born in New Port Richey. He had low muscle tone and lacked the strength to eat on his own. He was transferred to All Children's Hospital in St. Petersburg, then Shands in Gainesville, where he was diagnosed with Prader-Willi at about 10 months old.

The syndrome, named after the endocrinologists who discovered it, affects roughly one in every 15,000 children, according to the Prader-Willi Syndrome Association, but is one of the most common causes of life-threatening childhood obesity.

"The urge to eat is physiological and overwhelming," the association's website says. "It is difficult to control and requires constant vigilance."

The Grazianos had never heard of the syndrome, but they learned all about vigilance.

James was the baby of three siblings, and for years he couldn't understand why his hamburger had to be smaller than everyone else's, or why his sisters could have a snack and he couldn't.

The family stopped going out to eat, and watched themselves at home, too.

"You couldn't go back for seconds," recalled Mr. Graziano, a sealer for Dan's Driveway Designs in Spring Hill. "He'd have fits."

Still, James put on pounds, and his tantrums continued. At about age 14, his parents sent him to a treatment center in Pittsburgh for six months. Doctors eventually found a good combination of medications to temper his outbursts.

Still, James would try to go wandering. Mr. Graziano cut off the top half of James' bedroom door and installed a lock on the outside. That way he couldn't leave during the night or the few moments during the day when his parents would check the mail or hang laundry.

Mrs. Graziano, who works as an in-home caregiver, chuckled last week as she recalled the day she was making James' bed and looked up to see him pulling the door shut. He turned the key and threw it, leaving his mother to climb over the door and give chase.

"I made it to the front door before he got out," she said.

Whenever James bolted, his parents would ask him where he was going. "I don't know," he would reply, then begin to cry.

Despite his fits, James was a loving boy who was quick to give hugs, his family said. He struck up conversations with strangers, rooted for the Tampa Bay Buccaneers and the Rays, and felt at home with a karaoke microphone in his hand.

"He didn't know evil," said his sister, Sarah Graziano, 30, who often watched her brother while her parents were at work. "He had the biggest heart."

• • •

By the time James started exceptional education classes at Central High School, the Grazianos were looking for a group home close by. They found the residential home in Gainesville run by Arc. With some help from the office of former U.S. Sen. Bob Dole, an advocate for Prader-Willi families, the Grazianos convinced Medicaid to cover the cost.

The Grazianos explained to James that he would live with other people who had diet limits, too, but he didn't really want to go.

Even though he could read and write, in some ways he was still a child. He still believed in Santa Claus, but also understood the danger of overeating, his parents said.

"We cried, but it was the best for him," his father said.

From the road, the Arc house where James was staying looks like a typical ranch home, roomy enough to fit a large family. Inside, at least two staffers per shift kept watch over a half dozen or so residents, helping them prepare low-calorie meals and taking them on shopping trips, the Grazianos said. On Fridays, they went out for dinner and low-fat ice cream.

The program worked, the Grazianos said. James graduated from Gainesville High with a special education certificate. At 5 feet 9, he slimmed down to a healthy 185 pounds. He looked downright dashing in a black tuxedo and purple tie as he walked his mother down the aisle at his sister Kristen's wedding a couple years ago.

James spent every fourth weekend with his parents in Weeki Wachee. A host of medications kept his mood in check. He was happy.

But James and his fellow residents often tried to leave the Arc house, according to his parents and public records. The house's doors are equipped with alarms, but they weren't always activated, the family said.

The Alachua Sheriff's Office has been called to the house 58 times in the last three years, records show. At least 20 of the calls were for missing persons.

The Grazianos said Arc staffers told them James was on his way to one of the house's bathrooms the night he died and, finding it occupied, started toward another in the house, then must have left out of one of the house's side or back doors.

It was roughly the sixth time he had left, the Grazianos said. Usually, they said, staffers tracked him down quickly. This time, a detective told the family, staff members didn't know he was gone until a police officer showed up at the door.

Bradley, the Arc director, told the Gainesville Sun a few days after James' death that staffers are not allowed to physically restrain residents but do try to persuade them to stay. Some residents do sneak out, Bradley said, according to the Sun.

The Florida Agency for Persons with Disabilities is investigating the facility, said spokesman Jeff Saulich. If violations are found, the agency could levy fines, order a corrective action plan, or revoke the provider's license, Saulich said.

He declined to comment specifically about the Arc house, but said door alarms are not required at such facilities. In general, Saulich said, operators need to consider client characteristics such as a tendency to try to leave.

"They should have adequate staff to keep up with something like that," he said.

• • •

A Bucs throw rug adorned James' casket during the visitation held a couple of weeks ago at Turner Funeral Home in Spring Hill. My Girl and I Don't Want to Miss a Thing, his favorite karaoke songs, played on a stereo. He was buried the next day at Florida Hills Memorial Gardens.

The Grazianos declined to say if they're considering legal action against Arc. They are glad, though, that an investigation is under way.

"So what happened to my son doesn't happen to someone else's child," Mr. Graziano said.

The Grazianos returned to the Arc house last week to gather their son's belongings. The staff was cordial and helpful as the couple packed James' clothes, television, PlayStation and a family photo album with a Scooby Doo sticker on the cover. At one point, Mr. Graziano stopped to cry.

Every time they opened the door, the couple said, an alarm sounded.

Tony Marrero can be reached at tmarrero@tampabay.com or (352) 848-1431.

Questions haunt Spring Hill couple after son's death in Gainesville 08/25/12 [Last modified: Saturday, August 25, 2012 12:16pm]

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