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For close to two decades, a diocesan Catholic Charities agency has been one of New York State's leading service providers to individuals with a rare genetic disorder.

Catholic Charities Disabilities Services advocates for children and adults with Prader-Willi Syndrome and their families. The condition affects appetite, growth, metabolism, cognitive function and behavior.

Last fall, Catholic Charities opened its sixth residence for adults with PWS. A dozen people now receive 24-hour support, from life skills to help in following diet plans. There are support groups for families, case management services, respite services and caregivers.

At least 40 CCDS staff members have gone through special training to accommodate the complicated needs of individuals with PWS, whose main symptom is uncontrollable hunger that can lead to overeating and life-threatening obesity.

Range of issues
Infants with PWS often have poor muscle tone. Children often have cognitive disabilities and a hard time regulating emotions. Parents must deal with their children's temper tantrums and aggression; some children steal food or dumpster-dive in order to overeat. Social situations involving food are always a problem. Many families have to lock their kitchens.

"You meet these families and you say, 'I'm not sure that I could walk in their shoes," said Anne Ogden, executive director of CCDS, who does presentations on helping people with PWS. "This is such a commitment in terms of making sure that your child lives.

"Think about what you do with your family: There's always food involved," she continued. "People are crafty and that desire [to overeat] is always there. There are other service providers who won't touch this."

Lisa Cole's 10-year-old daughter, Miah Curtin, has PWS. Since Miah was three, Ms. Cole has attended a Catholic Charities support group. The agency's Medicaid service coordination advocate "gives me basically emotional support" at school meetings, she said.

At the support group, Ms. Cole learns "what works and what doesn't work" as far as handling meltdowns, school birthday parties, hallways with uncovered garbage cans and extracurricular activities with snacks present.

Family's experience
Miah is a Girl Scout, takes dance classes and attends reading programs and day camps in the summer. Children with PWS "thrive on a schedule," said her mother, who lives in Latham. "They need to be constantly busy, otherwise they get into trouble."

Miah has an aide at school; Ms. Cole accompanies her elsewhere and hopes to start a "buddy system" as Miah gets older. She and Mrs. Ogden told The Evangelist that misconceptions about PWS abound: not understanding the ramifications of letting a child with the condition indulge at a special event or have access to a kitchen, or mischaracterizing the individuals as violent.

"When you read about PWS, it's scary," Ms. Cole said. "But when you actually meet the child or adult, they're very loving and caring and sensitive."

Miah was diagnosed at two and a half weeks old. She had speech therapy, but didn't hit developmental milestones and spoke mostly sign language for several years. She still has some verbal issues, but does everything alongside typically-developing children.

"Now, she doesn't stop talking," Ms. Cole said with a laugh. Her kitchen is not locked, but is supervised: "We keep her occupied. She has all the kinds of dreams that normal kids have."

It's rare for a person with PWS to ride a two-wheeled bicycle, but Miah learned how at camp last summer. "Just because another person can't do it doesn't mean that Miah won't," Ms. Cole said.

CCDS' work with individuals with PWS is mostly funded by Medicaid, but the agency has received a $50,000 grant from the state Office of People with Developmental Disabilities since 2006 for statewide outreach, education and advocacy.[[In-content Ad]]

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