Rare eating disorder compels Pismo man to steal food

Tyler Jarvis, who has Prader-Willi syndrome, sits with his mom, Michelle Christian, at their Pismo Beach home.
Tyler Jarvis, who has Prader-Willi syndrome, sits with his mom, Michelle Christian, at their Pismo Beach home. jjohnston@thetribunenews.com

Even when the doors to his home were secured with double-sided deadbolts, Tyler Jarvis found ways to escape. And each time he broke free, he said, the same thought ran through his mind:

“I’m hungry.”

Because of a rare disorder called Prader-Willi syndrome, Jarvis, 19, has an insatiable appetite. And if he can’t get food at home, he’ll find a way to get it elsewhere, said his mother, Michelle Christian, of Pismo Beach.

“He has gone out a second-story window, right here, to try to get food,” she said, pointing toward a window near the kitchen table.

Typically, a neighbor will notice food missing from their home and send Christian a text, saying, “Tyler was here last night.” But last November, Jarvis’ uncontrollable hunger landed him in jail.

Now he faces several criminal charges, including three counts of residential burglary, which is a felony in California, unauthorized entry and vandalism. Even if he doesn’t get a jail sentence this time, a conviction could lead to a “strike” on his record, meaning if he committed another burglary, Jarvis — who has the intellectual capacity of an elementary school student — would be sent to prison.

“It’s not a question of whether he’ll do it again,” said his attorney, Raymond Allen. “He will do it again.”

His mother has asked the District Attorney’s Office for leniency, saying she plans to put him in a group home for people with Prader-Willi. But the prosecution worries that Jarvis is endangering himself and others. A felony conviction would do more to ensure that he gets help, said Assistant District Attorney Lee Cunningham.

“I think it’s great that the family wants to get him into a group home. We do, too,” Cunningham said. “But whenever you voluntarily check yourself into a program, you can voluntarily check yourself out of it.”

Genetic disorder

A genetic, chromosomal disorder, Prader-Willi syndrome was discovered by researchers at a Swiss hospital in 1956. Those with the syndrome — only 8,000 Americans are known to have it — have low muscle tone, short stature, low IQ and obsessive thinking. They have a low threshold for pain, body temperature abnormalities and, because they never feel full, those with Prader-Willi have a permanent sensation of hunger.

“Their brain is constantly and consistently consumed with how to get food,” said Lisa Graziano, executive director of the Prader-Willi California Foundation. “People will eat food out of trash cans. They will eat food off the floor. They will eat food that has been left out for days.”

If unregulated, those with the disorder might die a slow death from obesity or a fast death from a stomach rupture or intestinal perforation.

“A Prader-Willi person will literally eat themselves to death,” Allen said.

8,000The number of known cases of Prader-Willi Syndrome

700 The number of known cases in California

For that reason, Christian has to watch Jarvis’ food intake.

“Around the preschool years, the hunger starts,” she said. “And you start putting food up higher or figuring out tricks. And eventually it came to full lockdown.”

Her fridge is secured with two padlocks, and all dry food is stored in an outdoor pantry that is also padlocked. Making matters more difficult because of Jarvis’ low metabolism, his mother has to keep him on a low-calorie diet — about 1,400 calories a day — which is typical for Prader-Willi syndrome. According to WebMD, a male Jarvis’ age typically requires 2,400 calories a day.

Jarvis, who has some features similar to Down syndrome, said he tries to overcome his craving.

“I keep myself busy every day,” Jarvis said. “That helps me not think about food.”

After a visitor arrives, Jarvis shows him his three-wheel bike (he doesn’t have the balance to ride a two-wheel bike), a hat signed by skateboarder Tony Hawk, and a trick his dog can perform. But as much as he tries to keep his mind off food, experts say he can’t help himself.

When Carolyn Murphy, a forensic psychologist, interviewed him on the balcony of his home, he began to cry because he could smell food and was unable to get to it, she testified at a preliminary hearing.

Kevin Perry, a forensic psychologist at Atascadero State Hospital, testified that Jarvis has called 911 and pretended he was suicidal just so he could be removed from his home and placed in a psychiatric facility where he would have access to more food.

“The records indicated, in fact, he would gain 1 to 2 pounds each time he did this,” Perry said, testifying for the prosecution.

Breaking free

The window near the kitchen is now blocked by a two-by-four, but etchings at the bottom of the board show where Jarvis has tried to pry it off with a butter knife and meat tenderizer mallet. In the past, he’s taken apart door locks.

Despite a low IQ, he’s crafty when it comes to escaping.

“It’s almost a savant skill,” Graziano said.

After escaping his home in September 2014, Jarvis stacked two ice chests on top of each other and entered a window to a neighbor’s home. Once inside, he took frozen burritos and vanilla ice cream.

That same day he took food from another neighbor’s home as well.

Stealing food is not uncommon for people with Prader-Willi, Graziano said.

Whenever Jarvis escapes from home, it can take hours for his family to find him. His sister, Chelsea Jarvis, 22, is usually the one.

“I ran away once, and Chelsea found me over by the baseball fields,” Jarvis said, sitting at their kitchen table.

“He had a bag full of melted ice cream and dirt and sticky stuff all over his face,” Chelsea Jarvis said, adding that he was also overheated.

Normally, Chelsea brings her brother home, and she and her mother try to figure out new ways to keep him from breaking out. But last November, his quest became dangerous.

Chased with shovel

Due to issues related to the disorder, Jarvis had been at the county mental health facility last year. Another patient told him that if he didn’t like his mother’s rules about eating, he should become homeless.

On Nov. 18, 2014, according to a court motion filed by Allen, Jarvis entered a home in Arroyo Grande and stole things he’d need to be homeless, including a backpack, sleeping bag, video games, money and candy.

“I think it’s an indirect attempt to, long term, be able to satisfy that childlike fantasy of, ‘I’m going to run away and eat whatever I want,’ ” Murphy testified in court.

The homeowner, startled to see a stranger in his house, grabbed a shovel and chased Jarvis out of his residence. After searching for her brother for 12 hours, Chelsea Jarvis finally spotted police cars and a handcuffed person sitting on the curb at Strother Park.

“And I turned around and, of course, it was Tyler sitting on the curb,” she said.

While police talked to Jarvis and filed reports after the September incidents, he was not arrested. But after he was confronted with a shovel-wielding resident, Jarvis was sent to jail, where he spent six days in solitary confinement for his own protection.

No one knows what can happen if somebody’s in the house when he breaks in.

Caryn Michaels, deputy district attorney

“It was horrible,” he said. “I did not sleep at all. Did not shower.”

He didn’t like the man in the next cell.

“He was not nice,” Jarvis said. “He didn’t stop talking.”

The District Attorney’s Office, now considering all three break-ins, filed eight charges against him, including three felonies.

“The real fear for the (prosecution) is that if this behavior continues, many more people are going to be victimized,” Deputy District Attorney Caryn Michaels said at the preliminary hearing. “He’s entering homes in which people reside. And, you know, no one knows what can happen if somebody’s in the house when he breaks in. It’s very dangerous behavior.”

Cunningham said the behavior was dangerous for both the victims and Jarvis and could have had tragic consequences if a startled homeowner had a gun.

Michaels said she was also concerned that Jarvis showed no remorse and that his final burglary involved stealing nonfood items.

“I think Mr. Jarvis has kind of, in a rudimentary way, figured out that having the Prader-Willi syndrome has allowed him to use that to now gain the kind of property that he really wants to have — video games, money — and that he can fall back on the syndrome, and I think that’s somewhat sophisticated,” Michaels said in court.

Driven by his insatiable hunger, Allen argued at the hearing, Jarvis’ cognitive disabilities lead to childlike thinking. Jarvis committed the crimes, Allen argues, due to a medical, mental and psychological predisposition.

“He is always in pursuit of food,” Allen said. “It’s not a plan; it’s a fixation. Often completely juvenile, immature, unrealistic.”

Group home

Nearly a year since her brother’s arrest, Chelsea Jarvis walks over to him and tousles his short hair.

“Your hair looks good, kid.”

“Thanks, Sis,” he says, then looks to his visitor. “You wanna see a picture of me with really long hair?”

He leaves the room and returns with a framed portrait of himself, his hair in curls.

Ever since her son was a toddler, Christian, a hairdresser and single mother, has worked with her daughter to regulate Jarvis’ diet and keep him from getting food outside the home.

“I think they’re heroic,” Allen said.

But even with the help of caregivers, the task is overwhelming, which is why Christian asked the Prader-Willi Syndrome Association to help her find a group home that specializes in Prader-Willi syndrome. Since there are only about 700 known Prader-Willi cases in California, finding a group home that specializes in the disorder is difficult. But beginning Halloween weekend, Jarvis will do a weekend trial at one such home in Riverside. Right now he’s looking forward to it.

A Prader-Willi person will literally eat themselves to death.

Raymond Allen, attorney for Tyler Jarvis

“Because I’ll be with people with the same thing,” he said. “I can relate how we feel.”

The county probation department agrees that’s what Jarvis needs, concluding in one court document, “Little is going to aid him aside from 24-hour supervision in a specialized program.”

But the home won’t accept him while his criminal case is pending. His trial is set for Nov. 17.

Plea bargain?

The two sides are trying to work out a plea bargain. While the prosecution has offered a deal that would entail no jail time, it would include a felony conviction. So if Jarvis escapes his group home and commits another burglary, he could face prison.

His mother thinks prison would be fatal. But when asked if he is worried about going to prison, Jarvis simply answered, “No.”

“I don’t think he really understands prison,” his sister added. “Even when he talks about going to group homes, it’s an exciting, new adventure kind of thing.”

Allen said he thinks a misdemeanor conviction would be sufficient, and the Prader-Willi Syndrome Association wrote a letter asking the prosecution to dismiss the case. But Cunningham said Jarvis needs to be compelled to go to the home, and only a felony conviction would require that.

“There are a lot of cases where people need help to save themselves from themselves,” he said.

The prosecution might offer a deal for a felony that would not count as a “strike” conviction, meaning future burglaries would not require enhanced sentencing.

That might be the best Christian can hope for. But she wishes they would just drop the charges.

“I think they’re just not considering the disability,” she said, “treating him like a criminal, not a disabled person.”