Lutz and her husband, Rob, have seen the power of family meals in their own home. Their 14-year-old daughter, Isabel, has Prader-Willi syndrome. This complex genetic disorder, which affects one in 15,000 infants, leads to developmental delays, including initial feeding difficulties that turn into a lifelong insatiable appetite and penchant for chronic overeating.
The impact that Isabel's condition has had on the family cannot be overstated. The Lutzes also have an 11-year-old daughter, Natalie.
"We knew something was wrong with Isabel at birth," recalled Deb Lutz, a Monmouth County, N.J., native. "The first indication was that she was very floppy. She had low muscle tone."
It took more than five months to get the diagnosis - a condition Lutz had never heard of. She learned that an irregularity in the hypothalamus means that people with PWS never realize that they are full. As infants, they need feeding support; but that is soon replaced with an insatiable appetite. They are always hungry and obsessed with food.
Although this frequently results in obesity, that isn't so in Isabel's case. If anything, the 5-foot-2-inch, 110-pound teen is small for her age. Physically incapable of monitoring her own eating habits, she needs constant oversight.
And because her low muscle tone affects physical stamina, Isabel doesn't play sports or burn calories like a typical teen. Keeping her on a low-fat, 1,100-calorie-a-day diet is a constant challenge. A hardworking student who attends school with an aid, Isabel just completed eighth grade at Welsh Valley Middle School, in Penn Valley, and starts at Rosemont's Harriton High School next year.
"Like most teenagers, Isabel struggles with social peer interaction," said her mom. "On a certain level she understands PWS, but as a teenage girl she wants to have friends and go to parties. But food is always an issue."
Coping with PWS at the Lutzes' means keeping every scrap of food in the cabinets and refrigerator under lock and key. Even so, there are times when Isabel outwits the system. Evidence of a binge results in what her mom calls "lockdown mode."
"We don't get angry, but she knows if this happens there are natural consequences," Lutz said. "We try to figure out the source of the snacks and get her back in balance."
A village of medical experts, including her local pediatrician and a Long Island endocrinologist who specializes in PWS, keep Isabel healthy and on track.
"The school system, the teachers, everybody has been incredibly supportive," Lutz said. After Isabel was born, Lutz's mom, Lynne Zarrin, moved from New Jersey to help with her care. "We couldn't do it without her," Lutz said.
Staying focused on healthy eating is all-consuming, said Lutz, who comes from a family with weight issues.
"We eat pretty simply and almost always at home," she said. A typical dinner might be a chicken Caesar salad or spaghetti with ground turkey meat sauce. "At first we thought, we're never going to be able to go out to dinner, but it hasn't stopped us from doing anything. Her successes are really big, really great."
When the family does go to a restaurant or to a party, there's a game plan in advance.
"We talk about making lower-calorie choices, sharing items to keep within her limit," Lutz said. "Maybe it's putting five things on her plate of her choosing, then that's it. Once she gets a plate of food in front of her, you can't take it away."
The good thing
One of the reasons Lutz was drawn to b.good was the dearth of healthy restaurant options for her family. And after 20 years marketing consumer products at Johnson & Johnson, she was ready for a career change, ready to do something more personal.
When she met one of b.good's founders at an international franchise convention, she was immediately attracted to the concept. "I thought he was on point with where people are going with food now. They want to know where it comes from, they want to connect to their community and eat well. And the food has to be delicious."
Her first restaurant, at the Promenade at Sagemore shopping center, on Route 73, takes over a 3,000-square-foot former Lilly Pulitzer. It has seating for 100, including an outside patio.
Local food sources will include Black Angus beef from Roseda Farm, in Monkton, Md.; sweet potatoes from D. Spina & Sons, in Salem, N.J.; milk and ice cream from Chambersburg's Trickling Springs Creamery; and burger buns from Wild Flour Bakery, in Northeast Philly.
As she feverishly gets ready for today's opening, Lutz said that she feels nothing but optimism for the future.
"I am so thankful to Isabel in so many ways," she said. "Her PWS has brought us together and made us stronger as a family. My husband and I were united from day one in making all this work. Our daughter Natalie is very sensitive and understanding, not just about her sister's issues, but about other people's issues as well. We've all had to learn a lot of patience."
Because PWS affects a small number of people, there's not a lot of R&D devoted to the search for a cure. "There's lots of research about obesity, but PWS is more than just that," Lutz said. The biggest challenge is knowing that Isabel will never be able to live independently.
Whatever Lutz may say, the constant policing and vigilance must get exhausting. "It does sometimes," she admitted. "Those are the days when, after the girls are in bed, Rob goes out for a tube of cookie dough. We eat that, and we're good to go."
For more information about PSW, visit pwsausa.org/syndrome.
Beth D'Addono has been writing about the Philadelphia and national restaurant scene for more than 17 years. Read more at unchainedtravel.com