BEVERLY — Mary Raymond wasn't fully prepared for her 22-year-old son to leave home. But she knows that someday she and her husband won't be around to take care of Davis, who has a rare genetic disorder known as Prader-Willi syndrome.
"When we were thinking of what the future holds, we always wanted Davis to be able to live in a safe place, a happy place, and to be with his friends," Raymond said.
That dream has been realized with the opening of a home in Beverly for five young adults with Prader-Willi syndrome. The home is run by the non-profit agency Northeast Arc, which held a ribbon-cutting ceremony at the house on Friday.
Prader-Willi syndrome is characterized by low muscle tone, cognitive disabilities and behavioral problems. Its hallmark characteristic, according to the Prader-Willi Syndrome Association, is chronic feelings of insatiable hunger that can lead to excessive eating and life-threatening obesity.
People with PWS require strict controls, sometimes including padlocking access to food in order to maintain normal weight and help save their lives, the association says.
"It's like they need food like someone else needs oxygen," said Raymond.
Raymond, who lives in North Reading and is president of the Prader-Willi Syndrome Association of New England, joined with other parents in lobbying the state for a home for people with PWS. The Massachusetts Department of Developmental Services assigned the task to Northeast Arc, which receives its funding from the state agency.
Timothy Brown, director of innovation and strategy for Northeast Arc, said he looked at more than 40 properties for sale before settling on the home in North Beverly (the agency asked that the street not be named).
Brown said the previous owner had a degenerative muscle disease and had remodeled the home, so it came with many of the features the residents would need, including wheelchair ramps, an accessible bathroom, a small gym with exercise equipment, and even an indoor hydro-therapy pool with a wheelchair lift.
The house also needed to be located away from business areas, to avoid anxiety and temptation in terms of food. There's a large, flat yard to encourage outdoor activities.
"This checked every box we were looking for," Brown said.
Northeast Arc bought the home for $765,000. The only major changes needed were to wall off the kitchen to prevent access (the refrigerator is also locked), and to create two more bedrooms on the first floor.
Piera Gerena, residential program director at Northeast Arc, said the Beverly home is the third in Massachusetts for people with Prader-Willi syndrome, and the first in this part of the state. The home is staffed by Northeast Arc. The five residents, ages 22 to 24, spend much of their time at day programs, working or volunteering.
Marylou Sudders, the state's secretary of health and human services, attended the ribbon-cutting and said, "I hope you see that this is what taxpayer dollars can truly do to transform people's lives."
Raymond said her son was ready to move on because most of his peers at his day program live in group homes. He likes the fact that he can work out in the exercise room, and there are twice-a-week trips to Planet Fitness. She described the staff as "kind and loving."
"Davis is very happy here," she said.
Staff writer Paul Leighton can be reached at 978-338-2675 or firstname.lastname@example.org.