Man With Prader-Willi Feels ‘Safe’ Now
SAN LUIS OBISPO, Calif. — Since Tyler Jarvis moved into a specialized treatment home in Riverside County in December, he’s settled into a steady routine of daytime activities, volunteerism, exercise and doing the kind of things young men in their early 20s do — play video games and talk to girls.
Not only is he no longer afraid that he’ll try to sneak out in the middle of the night to satisfy his uncontrollable and insatiable hunger, but he’s also lost 7 pounds.
“I like it here,” Jarvis said. “I feel safe here.”
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Jarvis, 20, lives with Prader-Willi syndrome, a rare life-threatening genetic disorder that, among other things, makes him hungry all the time. That nonstop hunger landed him in San Luis Obispo County Jail for five days after he broke into an Arroyo Grande home in November 2014 to steal food, a sleeping bag and other items he would need to run away from home and be homeless.
At least if he were homeless, he thought, he would be free to eat anything he wanted.
Because of his disorder, the San Luis Obispo County District Attorney’s Office eventually dropped most of the nine charges against him on the condition he relocate to a 24-hour home for people with Prader-Willi syndrome.
Despite being some 250 miles away from his family, Jarvis said this week that he is happy in the new home he shares with two other young people with the same condition.
Things are looking up, he said, and he’s enjoyed telling his story to People Magazine and on the TV show “The Doctors.”
Things are going well enough for Jarvis that on Thursday, his attorney went before a San Luis Obispo Superior Court judge to ask that Jarvis’ probation be terminated, a move that ostensibly opens the door for Jarvis to one day ask that his conviction be expunged from his record. The request was denied, but the judge indicated that she was open to reconsidering in the “not-so-distant future.”
Only about 8,000 people in the U.S. are known to have Prader-Willi syndrome, and those with the disorder typically have low muscle tone, short stature, low IQ and obsessive thinking. They also have a low threshold for pain and body temperature abnormalities, in addition to the permanent sensation of hunger.
Those with the disorder are known to be especially crafty in their never-ending search for food. Despite padlocking the doors and windows of their home and a long list of other measures, Jarvis’ mother, a Pismo Beach hairstylist and single mother of two, simply could not stop him from escaping their house.
Jarvis was eventually arrested on suspicion of felony residential burglary charges after an Arroyo Grande man discovered him in his home stealing food and other items and chased Jarvis out of the home with a shovel.
It wasn’t the first time Jarvis had been caught stealing food from neighbors, but it was the first time an incident came close to ending in violence.
That risk and Jarvis’ family’s inability to protect him from himself prompted local prosecutors to charge Jarvis with three felony burglary and attempted burglary charges as well as three misdemeanors.
If convicted, he faced possible time in state prison, which his mother, Michelle Christian, said would have been a “death sentence.”
After a Tribune article featuring Jarvis’ case prompted letters to the editor calling for leniency, plea-deal negotiations intensified between prosecutors and Jarvis’ attorney, Raymond Allen. The prosecution eventually restructured the charges to allow Jarvis to plead to misdemeanors last November.
Under conditions of the plea, however, Jarvis was required to find and move into a home that could provide 24-hour care specific to his condition and meet regularly with a probation officer.
Christian said during a recent afternoon visit on the back patio of her son’s new home, known as the Tradewinds Home, that she and Tyler had searched for four years to find such a place. Given the rarity of Prader-Willi syndrome, such facilities are hard to find. Only 20 homes in California operate specifically to the disorder.
Following the plea, Christian contacted the Foundation for Prader-Willi Research, which was able to connect her to People’s Care, an organization that operates several homes throughout Southern California that provide assisted living and other services for people with special needs.
After a trial visit over Halloween weekend, Jarvis said he knew this was the place.
“I told my mom, ‘I want to live here,'” Jarvis said.
The cost of housing Jarvis is covered through the state, and Christian provides basic personal items and clothes.
For Christian, the results of her son’s criminal case is a painful trade-off. On one hand, she said, she’s happy that he’s out of criminal trouble, that he has housemates and staff to watch out for him, and that he says he’s happier there.
Still, she had hoped the District Attorney’s Office would dismiss the charges, and that a similar residential facility could care for her son closer to San Luis Obispo County.
“I hate it,” Christian said. “I miss him like crazy, but I know this is what he needs. It’s what we both need.”
Christian said she realized that Jarvis required supervision she couldn’t provide while working a full-time job. The two talk several times a day using the FaceTime smartphone app.
“It’s been hard on all of us. Tyler’s been my whole world,” Christian said. “But it’s for the best.”
The newly remodeled Tradewinds Home sits on the corner of a windswept block in Menifee, an unincorporated community in southwest Riverside County.
The four-bedroom home has a common living room complete with communal video game systems and widescreen TV, a workout room with a treadmill and other exercise equipment, and a large backyard with a lawn.
But it is also equipped with keypad locks on all doors, alarms on windows and several safety features inside the home to secure anything edible.
Tarsha Foster, one of several People’s Care caretakers who work at the Tradewinds Home, said the residents are served three full meals per day with designated snack time in between. Snacks are limited to healthy foods such as fruits, vegetables and yogurt.
The residents attend a day program that usually entails a trip out into the community, where they participate in various volunteer activities, such as cleaning up leftover trash at nearby parks, and an hour of exercise.
The residents also are taken on special trips to aquariums, the movie theater, the bowling alley and the occasional dinner out at a restaurant.
Residents are not allowed in the kitchen, but they may be alone in their rooms should they wish, though they are checked on by staff every 15 minutes, Foster said.
“Before, I would get in trouble,” Jarvis said. “But because I have everybody here for me, I feel safer.”
Foster said it’s a constant challenge to keep the residents busy and their minds off their food cravings.
“They tend to centralize everything around food,” Foster said. “And when we see that they’re just focused on food, we just remind them to relax, play a game, and just remind them that we’re not going to let them miss a meal.”
Foster said that Prader-Willi syndrome is not a disorder that can be cured.
“It doesn’t go away, unfortunately,” Foster said. “They will always overeat, and they will never feel full. So they will always have to have a caretaker.”
Jarvis shares the home with a man and woman close to his age who also live with Prader-Willi. He’s made good friends with the two, and the three are awaiting the arrival of another female roommate next month, he said.
He likes hanging out with his housemates, playing games and watching movies and TV shows — the zombie hit “The Walking Dead” is his favorite — as well as getting exercise outside.
He has a girlfriend, a 21-year-old also in special care that he talks to on weekends and whose picture he proudly displays on his cell phone.
His room is decked out just the way he likes it, complete with a display of his 12 Special Olympics medals and posters of mixed martial arts fighter Ronda Rousey.
“She’s the best,” he said.
Jarvis said he’s discovered through his volunteerism that he wants to get a part-time job working with preschool children, and he has been advised by the head of a local organization to take 12 units of early-childhood education at a local community adult school.
“I see a big difference in his attitude,” Christian said following the end of a recent two-day visit. “Now he can concentrate on his life. He doesn’t need to worry about getting in trouble or whether he’s overeating.”
Asked why he thought his story resonated with people in magazines and on TV, Jarvis gave a puzzled look as though the answer should be obvious.
“Well, because I’m a pretty cool guy when they get to know me,” he said.
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