Many people can remember a time when they couldn't seem to get full.
But people with Prader-Willi syndrome feel that way all the time.
Prader-Willi syndrome is a genetic disorder that occurs in one of every 15,000 to 25,000 live births, according to theNational Institutes of Health. Those who have the disorder never feel satiated and eat uncontrollably - to the point where they must live in an environment where food is locked away from them.
But The Arc of Alachua County will expand its abilities to help people with Prader-Willi syndrome, or PWS, face the challenges of living with the disorder and gaining control of their lives when it opens The Century Oak Group Home at The Arc between August and October of this year. It will allow the nonprofit, which has served people with PWS since 1989, to offer greater, hands-on care, said Mark Johnson, The Arc's development and public relations manager.
Right now the nonprofit serves about 70 people with PWS through treatments involving weight management, exercise programs, and behavior modifications. For most clients, that treatment includes living at one of The Arc’s 8 PWS-specific group homes or combination group home. Previously, The Arc purchased homes and later modified them to meet the needs of PWS clients, said Joe Jackson, The Arc’s residential director.
But according to Johnson, Century Oak Group Home will be “the first specifically designed and tailored for helping Prader-Willi clients.” One feature in the home, which officials recently broke ground for, is a specialized kitchen with lockable cabinets, food pantries, and refrigerators to protect clients from eating too much, he said.
Beverly DeLemos, president of the Prader-Willi Florida Association, and who also has a child with PWS, said she believes PWS-tailored homes are invaluable to PWS clients and families, because such homes take food out of the equation and give clients the resources to lead safer, healthier lives.
She also said the home will also add something else to their lives - love and acceptance.
“Sometimes when you’re a person living with a disability, it’s very hard for the outside world to do that, " DeLemos said, "so by living in a Prader-Willi specific home where people understand how you feel everyday - there’s that love and acceptance that really all of us want.”
Angelia Yacovone's 28-year-old son has Prader-Willi syndrome, but living 5 hours away from him makes it difficult to ensure her son is kept safe.
"The new safety features are definitely a relief to me and I'm in favor of things like safety monitoring cameras," said Yacovone.
In addition to the specialized kitchen, the home will also have a security system, cameras in the common room and exterior of the house, a gate with sensors, and around-the-clock care. These precautions are necessary for the health and safety of its clients, as it will be equipped to handle those with the most-extreme tendencies, such as the urge to escape to find food or destructive behavior, Jackson said.
To combat potential damage to the home stemming from clients’ food frustrations, Jackson said the house will be built from special materials, such as Plexiglas windows instead of regular glass.
"I think my son views the cameras as an intrusion and lack of privacy, but also as a great help and reminder," said Yacovone. "He understands it contributes to his safety and keeps him less anxious, worried and aggressive."
When the home opens, it will be able to house six PWS clients. They will most likely be chosen from PWS clients The Arc currently serves, specifically those that need PWS support and residential housing the most, Johnson said.
The group home will be at 1811 NW 9th St. in Gainesville. A Florida Housing Finance Corporation grant of $367,000 and private donations will fund the project’s estimated cost of $390,000 to $395,000, Johnson said.