An island of safety

Home on L'Esprit de Noël tour tailored for family with special-needs daughter

Lisa Marshall, Special to the Rocky

Published November 10, 2007 at midnight

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It's considered the heart of the house, the place where guests gather at parties and children gravitate after school to search for a snack and do their homework.

But for Paul and Amy Wissmann, the kitchen was always considered a danger zone.

Their oldest daughter, Amanda, 18, was born with a genetic disorder, Prader-Willi Syndrome, which causes mental retardation, behavioral problems, low muscle-tone and an insatiable appetite so severe that parents must literally lock away food and strictly limit calories to prevent life-threatening obesity in children who have it.

For Paul and Amy, that has meant keeping a cumbersome padlock on the refrigerator and cabinets, vigilantly keeping Amanda out of the kitchen and restricting when and where her two younger siblings eat. Even then there were problems.

"When she was 5 we came down one morning and there was food all over the kitchen. She had pulled everything out of everywhere and tasted it in the middle of the night," says Amy. "It seemed like there was always some way for her to get into the food."

Until now.

When Paul, a partner at KPMG international accounting firm, got a transfer from Los Angeles to Denver in 2005, the couple saw the move as an opportunity: They'd build their Colorado dream home from the ground up and make it safe and comfortable for the entire family.

"We wanted it to feel warm and homey and have Amanda be able to use more of the house," says Amy, a former vice president with Morgan Stanley Real Estate Fund.

Mission accomplished.

Step into the Wissmanns' Cherry Hills Village residence, one of five to be featured in this year's L'Esprit de Nol home tour Friday through Nov. 18, and you'll find an elegant 9,000-square-foot home painstakingly detailed to meet the needs of two discriminating teens and an eldest daughter with special needs. Not to mention a father with an affinity for wine and film and a mother with a hankering for year-round outdoor entertaining and the modern décor of California.

Amy, who enjoys decorating, worked for more than a year with designer Dale Simon to tastefully incorporate every piece of furniture and artwork from their contemporary California home into their traditional-style Colorado digs.

Builder Bob Brown helped the family come up with a design for a safe but aesthetically appealing kitchen and a floor plan that gave Amanda - whose illness can lead to mood swings and difficulty sharing - some space for alone time.

"We have a lot of different spaces for the kids to live their lives separately when they want to and get together when they want to," says Paul. "They like that freedom."

In the kitchen, a sleek lock system - consisting of five tiny black buttons and one small knob - blends seamlessly into cream-colored, country French-style cabinetry and matching panels on the appliances (which also remain locked). A stained cherry wood center island with dark "suede" granite countertops provides an inviting place to sit and sets the tone for a color contrast flowing throughout the house.

In the dining room, Amy's flair for the contemporary shines, with a sleek 14-seat rectangular table, a modern Donghia "Stellare" glass chandelier and a privately commissioned oil-on-canvas street scene with subdued colors that set the tone for the room.

White, custom-designed fireplace mantels throughout the house contrast beautifully with ebony wood furnishings, dark-stained cabinetry, oak flooring, black slate tile and an earthy beige backsplash.

A curvilinear staircase, accented with a black wrought-iron handrail, greets visitors when they walk in the door.

The house reflects the personalities of its owners.

"How many times are you going to be able to build a house while all the kids are still living with you?" Amy asks.

"You try to get everybody what they want."

For Paul: A vast basement wine cellar, a six-seat, state-of-the-art home theater, basement driving range and family game room.

For Amy: A plush outdoor living space complete with a stone fireplace and European-style fountain.

For Alex, 13, and Nicole, 16: a separate upstairs homework room with individual bays for their computers and uniquely designed bedrooms (black granite for him, a Ritz-Carlton look for her) to reflect their personalities.

And for Amanda, at last, a house that she can freely explore and some space of her own.

"It's my private room," she explains, seated in her own recreation room, where she can work out on a treadmill or stationary bike, tinker on her computer, listen to High School Musical CDs and watch Harry Potter movies with friends. "I love it."

A hunger that refuses to quit

Amy Wissmann suspected early on that something wasn't quite right.

When she was pregnant, she noticed a troubling lack of movement inside her belly. At birth, her newborn Amanda seemed unusually limp. And when it came time to eat, the child had so much difficulty sucking that her father had to patiently hold a bottle above her lips and tap formula into her mouth.

After scouring Los Angeles medical libraries and consulting with specialists, the Wissmanns had their answer: Amanda had Prader-Willi Syndrome, a rare, often-misunderstood genetic disorder characterized by a failure to thrive in infancy which, ironically, transforms into an insatiable hunger by age 1.

"They have a chronic desire to eat and no feeling of satiety at all. They feel like they are starving all the time," says Amy, who is working with the Prader-Willi Syndrome Association of Colorado to raise awareness about the disorder and to try to build a group home for older children who have it.

An estimated one in 12,000 to 15,000 children is born with the syndrome. In Colorado, roughly 287 to 358 are believed to have it. Among them is Rockies manager Clint Hurdle's 5-year-old daughter, Madison.

Prader-Willi sufferers tend to have exceedingly low muscle tone, which slows their metabolism and compounds their tendency toward weight gain, stunted stature, severe developmental delays, learning disabilities and obsessive-compulsive behavior that worsens with age. But their most heartbreaking symptom is the hallmark ravenous hunger and tendency to horde food.

To prevent morbid childhood obesity, parents must put their children on strict diets early on (Amanda, now 18, eats precisely 1,200 calories per day), encourage exercise and bolt refrigerator doors, cupboards and trash cans.

Those unique requirements make it difficult for adults with Prader-Willi to live independently - they would be endangered by their own temptation to eat. And locking up the kitchen in a group home with people with other disabilities would infringe upon their rights, Amy says.

With Amanda nearing adulthood, Amy and Paul are looking for sites and collaborating with other parents in hopes of creating a home where food access is controlled and those with this disorder can live semi-independently. Thus far, no such place exists in Colorado.

"There are no places for these kids, and we want them to have a safe, long-term living environment where they can be happy," Amy says.

For more information about Prader-Willi Syndrome, log on to stillhungryforacure.org.

If you go:

• What: Central City Opera Guild's L'Esprit de Nol 31st Annual Holiday Home Tour and Boutique

• When: 10 a.m. to 4 p.m. Nov. 16, 17, 18

• Where: Five homes in the Cherry Hills Village neighborhood, decorated to the hilt in holiday style

• Tickets: $18 or $20 at King Soopers

• Information: centralcityopera.org or 303-292-6700

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