Through No Fault of Their Own: Living and Loving with Prader-Willi Syndrome

Today, Matthew is living in one of two specially designed homes operated by Hope Network for men and women with Prader-Willi. But for the better part of two decades, the responsibility for tracking his insatiable appetite lay squarely on Tracine’s shoulders, a near-impossible task for someone who works full-time and serves as mother to two older kids as well.

“He’s been by my side for 22 years, so I was extremely nervous to have Matthew go live in a home,” Tracine recalls of the angst involved in moving Matthew to Hope Network’s Kinney Home in the city of Walker.

“But the staff is phenomenal, and Hope Network is absolutely phenomenal. And Matt and I continue to have a really great relationship.”

Tracine feared something was different about Matthew even before he was delivered. “I’ve got two older children, and they would move and kick during my pregnancies, but Matthew never did.”

He was born January 4, 1990, and “we knew something was wrong immediately,” she says. Matthew was diagnosed with PWS at 4, with doctors explaining that it was a chromosomal abnormality which surfaces in between 1 in 12,000 to 1 in 15,000 births.

The syndrome is characterized by low muscle tone, short stature, incomplete sexual development, a lower than normal IQ, and a chronic feeling of hunger. Before PW was better understood, some of its victims died of obesity, while others – who were denied food – basically starved to death.

The insatiable desire for food – in essence, those with PWS never “feel full” – can prompt extreme behaviors.

In Matthew’s case, the family lived with locks on the refrigerator and all the cupboards. They also installed a system with sirens hooked up to the doors and windows to signal when Matthew was escaping to find food elsewhere.

“He started food-seeking when he was about 6, and it got rougher as he got older,” says Tracine.

In their own home, Tracine was astonished to find Matthew with his ear to combination locks, a trick he used to actually open them. They progressed to padlocks with keys, but Matthew found a way to rip the cupboards from their frames. As for the security system, “he got smart enough to figure out how to turn it off” when he wanted to exit the family’s Marion Township home located in a rural area just outside of Charlevoix.

Matthew’s condition affected everyone in the family. Older brother Gordon, now 25, would become upset when he turned his back for only a second only to find his food had disappeared. Matthew had eaten it. Older sister Molly, 23, became Matthew’s guardian at school, once getting in a fight when kids called her brother the “r-word”. Tracine and Matthew’s father divorced when he was 11. She remarried Travis Hummel, whom Matthew calls dad. At 18, Matthew started breaking into neighbors’ homes and garages. Once, he was found eating an entire pie. In another instance, he was gnawing on frozen pork chops.

Tracine and Travis both work full-time, and knew they could no longer handle Matthew living at home. She researched her options online, and found a facility in Wisconsin, but insurance issues prohibited that as an option.

She happened upon Hope Network, and worked through Matthew’s caseworker to have him admitted to the Kinney Home, where he’s been just over a year.

Since re-locating there, he’s lost more than 50 pounds, and participates in a wide variety of activities designed to help curb his weight and also distract him from focusing on food. “We have to be very creative,” says Alessandra Sala-Jasinski, supervisor at the home. “It’s not good for them to just sit on the couch.”

Matthew’s days begin as early as 4:30 a.m. with a shower or long soothing bath, followed by meds, breakfast and a trip to Ottawa Hills High School to participate with others in special-needs classes.

Matthew participates in select programs through a local YMCA, and also enjoys Special Olympics and attending a local church.

His room features framed pictures of wildlife, and in a corner rests a stack of movies. “Home Alone” is among his favorites.

He’s extremely shy with strangers at first, but when he warms up, will share how much he likes Michigan’s Adventure water park, and to go for rides on his adult tricycle. He also enjoys working a treadmill inside the home. In quiet moments alone, he loves to play the old version of “Battleship,” which involves putting plastic pegs into holes in an attempt to “sink” an opponent’s watercraft.

When he visits his home in Charlevoix County, Tracine says Matt still thrills to swimming, boating, fishing, and camping.

When she can, Tracine makes the trip to Walker and sometimes will take her son to an area motel with a pool. There are always risks, though. Even with a bell attached to the inside of the door, Matthew managed to silence it recently, then snuck out and opened the trunk of his mom’s car, devouring two boxes of Girl Scout Cookies.

Tracine’s wish, of course, is that people could see Matthew as more than a young man with a syndrome, and lauds Hope Network for accepting him as just that – a whole person. She’s especially impressed with the way they cared for Matthew when he broke a foot and needed months of follow-up care, including time in a wheelchair.

At the Kinney Home, the kitchen is locked down and off limits to Matthew and the other clients now living there. That doesn’t mean they don’t beg for food, though, and sometimes it creates friction.

“We need to say no, but also validate their feelings,” says Sala-Jasinski. “Sometimes it can be trying,” and she acknowledges that there is sobbing, screaming, and aggressive behaviors they must contain.

But the treatment regimen is apparently working for Matthew. He’s lost pounds, he stays busy, and he’s loved.

Next time she visits, Tracine plans to reward her boy’s weight loss with a trip to a department store. “He looks phenomenal,” she says, “and I’m looking forward to getting him some new summer clothes.

“He’s a sweetheart. A great kid. And I’m so proud of him.”