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Home away from home: Nonprofit provides for people with genetic disorder

By Harry Funk 5 min read
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Amanda Diaz doesn’t do her own cooking, nor is she allowed access to the kitchen where food is prepared and stored. But she has her own personal chefs, which she enjoys immensely.

“All the nice ones who come in here and cook for me,” she said of her personal chefs.

Jennifer Dayton is program coordinator for Mainstay Life Services, a Scott Township nonprofit that provides for people with development disabilities. In Amanda’s case, she has Prader-Willi syndrome, a relatively rare genetic condition that, in part, generates an insatiable appetite.

“She’s all right with the kitchen being locked, but it was a hard adjustment,” Dayton said. “People with PW have caused themselves to rupture their stomachs from eating so much, because they don’t feel it.”

As the sole organization in the region offering residential services to those who have Prader-Willi, Mainstay opened two new community homes for that purpose during 2016, including where Amanda resides in Mt. Lebanon.

“She’s 22, and she’s lived with me her whole life,” her mother, Stacey Diaz, said. “It was a big step to take at this age. Her older siblings had already moved out, and she expressed a desire to be like them. Why couldn’t she live independently?”

Stacey and her husband, Steve, also Mt. Lebanon residents, interviewed with several providers to try to answer that question, finally deciding on Mainstay.

“Not only because of their knowledge of Prader-Willi, which obviously is a huge thing, but it’s also because the organization tends to keep its staff longer than most,” Stacey said. “That’s a huge concern. These people do not function well with change.”

Community living specialist Donna Demsey, who has been with Mainstay for six years, helped with the transition when Amanda moved into the home in February.

“I have a lot of fun working with Amanda. We laugh a lot. We work things out,” Demsey said.

The going hasn’t always been smooth, but Demsey and fellow community living specialist Jamie Lang can draw on the expertise available through Mainstay about Prader-Willi syndrome.

“The training has been really wonderful, and there’s a lot of support,” Demsey explained. “You just have to stay open to take the advice and learn from people who know what they’re talking about, and putting it to use.”

She has another good resource, right there in the home.

“Amanda is a bright girl, and she knows about her condition. Her parents did a fabulous job of teaching her about PW,” Demsey said. “Her vocabulary is immense, and she can get her point across.”

For example, Amanda is well aware of her need to avoid high caloric intake. Meanwhile, she had been attending dances and other events organized by Friendship Circle of Pittsburgh, a group that helps children and young adults with special needs to become socially integrated, for nearly a decade.

“You can go up to the counter and get pop, which she can’t have. And they come around and put snacks on the tables,” Demsey said about the gatherings.

“She’s told me before, ‘You have no idea what PW is like. Some days I’m OK with it. Sometimes I’m not.’ She knows she can come to me. She came to me the one day and said, ‘I don’t want to go to the dance tonight, because they put food out.’ I know her. It was not a good day, so we found something else to do.”

Amanda’s schedule is a busy one. She volunteers on Mondays and Thursdays for Bloomfield-Garfield Corp., a community engagement organization, calling people about job openings. On Tuesdays, she works for Century Lending Services Inc. in Green Tree.

“I shred papers,” she explained, “and eventually they’re going to have me fax and scan.”

She spends Wednesdays at Friendship Circle, doing tasks including working with Excel Spreadsheet. And she is an adviser for the group’s monthly Friends On the Town group outing

“We’re normal people going out with friends to a restaurant, eating with friends,” Amanda said

Back at home, she writes her daily schedule on a dry-erase board just outside the living room, including 45 minutes of exercise twice a day. In an adjoining room is another white board listing what she’ll be eating in the way of meals and snacks, all fitting within her 1,000-calories-per-day diet.

Between healthy eating and physical activity, she’s lost 35 pounds, one of the many facets of her living in the community home that impresses her mother.

“The communication among the staff is excellent,” Stacey Diaz said. “They talk to me. They talk to each other. Everybody is on the same page most of the time, and you can’t ask for more than that.”

As for Amanda, she’ll pay them what might be the ultimate compliment:

“I call them my friends. I don’t have staff. I have friends.”

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