Hungry for More

The reality of living with Prader-Willi Syndrome

STORY BY GRACE MOORE

The Wilcox house is filled with locks. Locks on the cupboards, locks on the garbage, locks on the fridge. There are alarms on every window and every door.

Amy Wilcox and Jeff Wilcox haven’t spent a night outside of their house in more than 10 years; it’s been eight years since they had a night away from their kids.

But as their 18-year-old son, Jonah, a junior at Mead High School in Spokane Washington, prepares for graduation, the family begins to examine what else the future might hold.

Jonah Wilcox suffers from a sensory processing disorder known as Prader-Willi Syndrome. There are at least 8,000 Americans with the condition, according to the Prader-Willi Society. The syndrome is a rare and complicated condition caused by the loss, or partial loss, of an active group of genes on chromosome 15. There is a laundry-list of characteristic features associated with the syndrome, including low muscle tone, infertility, cognitive disabilities, certain forms of autism and, Jonah’s largest struggle — a chronic insatiable feeling of hunger.

This hunger now drives everything he does.

“It’s like I have a drug,” Jonah says, explaining what it feels like to perpetually starve. “Whatever I can do to get that next fix, whatever I can do to get high, I’m going to do.”

Jonah is 250 pounds and borderline diabetic.

The Wilcox’s quiet suburban house is wired like Fort Knox. It is essential that he not find extra food so cupboards, fridges and garbage’s must be locked. Because Jonah usually wants to stay home when the family goes out, every potential exit in house has an alarm as well.

Jonah quickly learned to use a wire-cutter; methodically tackling the garage-door alarm one afternoon, when the rest of the family was out, Amy says.

Once Jonah had cut himself free, he started off toward the closest neighborhood grocery store a few blocks away.

Even getting to the end of a city block can be difficult for Jonah; he’s legally blind, has no depth perception at all, and his weak muscle tone makes robust physical activity difficult.

But Jonah has memorized this route.

He’s well known at the corner store as well. His picture hangs in the break room because Jonah has been caught shoplifting there — multiple times.

He’s not supposed to come inside the store, unless he shows the manager his money first.

“If a teacher has a mini-fridge in class, Jonah will go to the front of the room and pretend he is turning in his work, or dropping something off on the teacher’s desk, he’ll duck down and coyly open the fridge and take something out,” Amy says. “Considering everything, he’s a mastermind when it comes to food.”

Jonah says he knows it’s wrong. But he’s starving.

“I get this really bad, guilty feeling after eating something I’m not supposed to,” Jonah says. “And even before and during it, I keep thinking ‘This isn’t normal,’ but my brain is telling me to do it.”

It’s hard for people outside the family to understand Jonah, Jeff says. Their friends, even the relatives that have had the situation explained many times, still preemptively judge Jonah, Jeff says. Outsiders see Jonah’s behavior and think he should just control himself better, Jeff says.

“I want people to know that I am more than my disorder,” Jonah says. “If they really took the time to know me, they would see, people would see, I am something to like.”

When Jonah gets hungry like this, he says it makes the rest of his behavior worse. His anxiety and frustration grow out of control usually leading to a meltdown of some kind.

Jonah’s dad, Jeff, gets a call from the Mead School District at least twice a week.

It’s always a behavioral issue, Jeff says.

Jonah frequently needs to be removed from the school and taken home.

This is hard on Jonah because the autistic tendencies of Prader-Willi make it hard to understand emotions and control them in a normal way, Amy says.

Jonah wants to be normal so badly, but will lose control and throw temper tantrums in class, Amy says. It’s hard for him to understand why this might make him stand out even more.

Jonah’s inability to process his emotions takes a toll at home as well. Once aggravated, it is incredibly difficult to calm him down, Amy says.

Jonah says he is lonely often. He always has to ensure himself that friends are not manipulating him — a trend that developed in seventh grade when a group of boys convinced him to eat their chewed up food, promising to be his friend, Amy says.

Jonah also has a hard time maintaining friends because he will most likely end up stealing food from their backpacks at one time or another, Amy says.

“Sometimes I think, maybe I don’t really have friends,” Jonah says. “It’s incredibly, hard to be my friend because I am not going to think of you like a regular friend.”

Jonah says he suffers from depression as well. It’s a different kind of depression, he says, due to the manic-depressive influence of his hormones.

This depression intensified the anxiety about his post-graduation plans.

The week Jonah got sent to detention, he asked his parents repeatedly, “what am I going to do after graduation?’ “Where am I going to go?”

Amy said they told him the options they were considering, but said there was several “unknowns.”

Jonah became introverted and more volatile than usual, Amy says. Until, finally, his anxiety, resentment, anger and fear, all came pouring out in a mid-class meltdown.

Instead of calling Jeff, the teacher took Jonah to detention. There he gave Jonah a pen and some paper and told him to write down everything he was feeling, everything under the surface that filled him with emotion.

Sitting alone in detention, Jonah wrote a short manifesto outlying the six categories of doubt and concerns he felt about his future.

“Group home/after graduation doubts and concerns I need made easier,” He called it. Beneath this he scribbled, “FOR MOM.”

“Part 1: Girlfriends/love/marriage. Part 2: friends/family,” Jonah wrote.

The list continues with Vacations, Food and Health followed by Schooling and Education. Under the sixth and final section, Jonah lists “Career.”

In his book of concerns, Jonah expresses the fear that he might not ever find a girlfriend, have a job he likes, find true love. He writes that if he wants to get married, he will have to marry someone with PWS from the same home he ends up living in. Additionally, Jonah writes that he will miss his family, and worries that he won’t ever be able to make enough money to live on, working the jobs he is able to do.

“Part of it breaks my heart,” Jeff says. “Because I know he’s carrying such a huge burden.”

Ever since Jonah made his list, life has been a little less strained, Amy says. But the days continue to be a battle, balancing Jonah’s needs and the demands of everyday life.