Penn Hills group home helps residents with genetic disorder
Ask Stephen Immekus what he enjoys most, and the response is almost immediate — spending time in his community.
But for Immekus, 27, who has Prader-Willi syndrome, going to the movie theater or out to a restaurant could be more challenging than it is for others.
“He's a people person, and if you sit with him for an hour he would have your whole life history,” said his mother, Sandy Immekus.
In October, Stephen Immekus moved from his home in Bethel Park to live in a group home in a quiet Penn Hills neighborhood with Brandon Whoric, 31, who also has the disorder.
“He's learned a whole new community while living in Penn Hills, and he loves it,” Sandy Immekus said. “It's the perfect distance for us and for him to adjust.”
Mainstay Life Services — a Scott Township-based nonprofit that provides residential services to people with developmental disabilities — opened a Prader-Willi group home late last year after a request from the men's families.
Immekus and Whoric now live together under 24-hour staff supervision.
Prader-Willi syndrome is a rare genetic condition that affects much of a person's body. There is no cure, and people who are diagnosed have lifelong struggles with obesity, intellectual development and growth.
Individuals with the disorder often have an obsession with eating, swallowing and chewing food, said group home program manager Frank Heeg.
“That urge is never satisfied, so our program helps them try and control it,” Heeg said.
Although similar to any three-bedroom residence, the Penn Hills home is tailored to help manage these symptoms. Each of the residents has his own bedroom and bathroom, and the home is decorated with Pirates baseball posters and stocked with shelves of their favorite movies and games.
Staff members plan activities for the roommates to do together based on their common interests. Every Tuesday, they go to a different library.
The kitchen is locked at all times, and each meal or snack is scheduled and monitored.
“When looking for a home, the number one thing to look for is a kitchen that can be locked down,” Heeg said. “Otherwise, they will sneak in and get food and they aren't going to be successful that way.”
The menu changes monthly, but Whoric's favorite foods include pizza, chili and turkey burgers.
“The food tastes good, and I can't complain,” he said.
Because of the syndrome, Immekus and Whoric burn calories at a much lower rate than normal and exercise has become part of their daily routines. In two 45-minute sessions, they clock-in cardio workouts on the treadmill, exercise bike or outside walking.
The goal, Heeg said, is to be able to monitor the men's lifestyles while also providing a sense of normalcy.
“We also want a space where there's enough room to have fun,” Heeg said.
For Immekus, who also has autism, the basement provides solace when he sometimes is overwhelmed. Inside his self-designed space is a stereo, lava lamp and activities.
Heeg, who also is in charge of another Prader-Willi syndrome group home in Penn Hills, said the two men have adjusted to calling the community home. Mainstay operates more than 50 homes across Allegheny County and provides other services.
Immekus' Bethel Park home has been dubbed “Mom and Dad's house” as he has transitioned to his new life in Penn Hills.
Since living in a Mainstay home, Immekus has learned to not let his disability hold him back. He now has a job at the Pittsburgh Zoo & PPG Aquarium, working in the warehouse once a week.
“We have seen such a big difference in him… more maturity in him,” Sandy Immekus said. “It has helped to decrease a lot of his behavior issues, and he's doing things that all young adults are talking about.”
Christine Manganas is a Tribune-Review contributing writer.