By Courtney Dentch
When Hollis resident Ana Magalee learned in the late 1970s that her teenage daughter had Prader-Willi Syndrome, a rare genetic disorder that affects the nervous system, she scoured books, magazines and any other reference materials for information to help her child.
Magalee found little literature and even less in the way of support from doctors or other parents.
“When a disabled child is born into a family, it’s really shocking,” Magalee said. “Every pregnant woman thinks her child will be perfect.”
But once Magalee became an expert at handling her daughter’s condition, which prevents the brain from regulating hunger and causes patients to constantly overeat, she was determined to use what she learned to help others, she said.
“As a parent of a disabled daughter, I struggled so hard to find services and information to help her,” Magalee said. “I realized parents were missing out on information that never reached them.”
So Magalee and a handful of other parents of developmentally disabled children started a network of support groups in 1992 that evolved into the Queens Parent Resource Center two years later.
Serving about 700 families from its Jamaica offices, the center offers full-scale family support, from respite care to after-school programs and day rehabilitation programs to agency referrals, said Magalee, the group’s executive director. The group’s office is at 88-50 165th St.
“The idea is to prepare them to be independent, and we try to allow families a little time for themselves.”
The programs are still geared toward children under age 21, but the group has expanded its services to adults as well, said James Magalee, one of the center’s leaders and Ana Magalee’s son.
“We do provide continuing resources for those over 21 so they can continue learning,” he said.
The center still stays true to its roots by offering a parent support network, Ana Magalee said. The group meets about 10 times a year and discusses topics suggested by the participants, including health concerns, how to find dentists and doctors that will treat developmentally disabled patients, and how to navigate the city’s Department of Education, she said.
“The parents, as the children grow and age, present us with things we never thought of,” Ana Magalee said. “Anything they need to know we try to teach them.”
Queens Parent Resource Center operates a group home in St. Albans, the Anne Marie Residence, named for Ana Magalee’s daughter, which houses about seven people, she said. The center is looking to expand its residency program over the next few months to include three new facilities. The apartments, one slated for St. Albans and two others slated for Jamaica, would offer a more independent living environment for individuals who graduate from the Anne Marie Residence, James Magalee said.
Anne Marie herself, now nearly 40, is living with four other developmentally disabled adults in a state-run Flushing residence, Ana Magalee said.
The center is also trying to open a storefront office on Francis Lewis Boulevard in St. Albans, a plan that could take about six months, Ana Magalee said.
To complement the new facilities, Magalee hopes to explore more socialization and senior citizen programs, she said. The group is also looking at offering youth and homeless programs, she said.
“We’re growing at a pace we have chosen. We don’t want to expand beyond a pace where we can offer quality services. We handle what we can and master that before we move on.”
Reach reporter Courtney Dentch by e-mail at TimesLedger@aol.com, or by phone at 718-229-0300, Ext. 138.
