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Forever Hungry: One Family's Struggle With Prader-Willi Syndrome

MINNEAPOLIS (WCCO) -- No parent wants their child to suffer from hunger pains, but for one Twin Cities family, that's a constant struggle.

Two-year-old Nick Joncas never feels full. He has a disease that has forced his parents to lock the kitchen cabinets and control his every meal.

When Nick was just 6-days-old, his parents, Colette and Eric Joncas, were told their baby had a genetic syndrome called Prader Willi. Both Nick's parents are nurses, but neither had heard of the disease.

In children with Prader-Willi syndrome, their metabolism only works about half as quickly as normal, which leaves them constantly hungry.

"He is literally feeling that he is starving to death," Colette Joncas said.

Dr. Bradley Miller, Nick's pediatric endocrinologist at Amplatz Children's Hospital, says even when Nick eats, his body doesn't register the food.

Miller said children with Prader-Willi syndrome have an issue with how their hypothalami regulate food and hunger. There is no cure.

"We just don't know how to fix it," Miller said.

Doctors say people with Prader-Willi syndrome feel ravenous; they liken it to the feeling healthy people get with they haven't eaten for three days. There's nothing those with the disease can do to minimize that feeling of constant hunger. But there are ways parents can help kids cope.

Nick's parents have decided to lock up the food cabinets. They say children with Prader-Willi syndrome often feel better when there's a lock on the fridge.

"If they know they don't have access to it, then they don't think about it, they don't dwell on it," Colette Joncas said.

Nick's parents say he's becoming more serious about food.

"He's much more likely to finish or clean his plate than he was before," Colette Joncas said.

Nick has a brother, Oliver, who is one year older. Oliver's supposed to have several more calories than Nick, a concept that may only be tougher on the boys as they grow up and become more aware.

"You've got one you can't feed and the other who's hungry and you should be feeding," Eric Joncas said.

Colette Joncas worries that later in life, Nick will likely have to live with the stigma of obesity. But unlike with most who are obese, Nick's poor choices won't be to blame.

For now, Colette Joncas spends hours each week preparing perfectly portioned meals. The Joncas family has strict food rules to give the boys' diets structure. There are no seconds, no desserts and no choices when it comes to meals.

"My kids don't know what suckers are, they don't know what candy bars are," Colette Joncas said.

For those with Prader-Willi syndrome, most calories go to fat for storage. Another symptom is that kids' muscles are weak due to the constant feeling of hunger.

Once a day, Nick gets a growth hormone shot. The daily injection helps him gain more lean muscle and burn off calories. Nick also goes to physical therapy three times a week to build up his muscles.

"He wasn't supposed to walk til 18 months old, he walked at 14 months old," Colette Joncas said.

Beating the odds is something Colette Joncas knows a thing or two about.

"Doctors won't tell you what your child can do, your child will tell you what they can do," she said.

While WCCO-TV's cameras were shooting at the Joncas household, Colette asked Nick if he was ready for lunch.

Nick replied, "No."

"I love to hear my child with Prader Willi tell me he doesn't want to eat, he'd rather play with his toys," Colette Joncas said. "It means we've got a little more time."

What looks like a victory to Colette and Eric may not look like a milestone to other parents: that's where Colette says she's found meaning. Life is about celebrating the little things.

"I don't care, I don't care if he doesn't go to college; I don't care if he doesn't do any of those things," she said. "I just want him to be happy. I don't want him to suffer. I don't want him to hurt."

While she can't take away his hunger, she can fill him with love.

"He loves and he knows that he is loved," Colette Joncas said.

One in 10,000 children have Prader-Willi syndrome.

A walk is planned for June 2 in Apple Valley at the Johnny Cake Ridge Park East at 10 a.m. The walk will raise money for medical research. So far, Colette Joncas is the top fund-raiser.

For more information on the walk, click here. WCCO-TV's Aristea Brady is emceeing the event.

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