Any kid would think that Luke’s new room is pretty cool. It has a squishy and colorful play mat floor instead of carpet, a voice activated LED panel that flashes pools of color, a small ball pit and child-sized rocket ship in the corner. For Luke Hettiger, of Webster Groves, the room is a truly a wish come true.
Luke’s new bedroom was made possible by the Make-A-Wish Foundation of Missouri and several St. Louis-area businesses, including MC-Industrial, who’s employees raised funds for the remodeling project. Luke’s “wish” was unveiled in time for World Wish Day, which marks the 30th anniversary of the Make-A-Wish Foundation worldwide.
“I think the world of what everyone did for my boy,” said Kurt Hettiger, Luke’s dad. He added that all he wants to do in life is make Luke as happy as possible.
Wishes are granted to children under 18 who have a life-threatening medical condition. Luke has Pallister-Killian Mosaic Syndrome, a rare chromosome abnormality. Only a few hundred children have been diagnosed with the syndrome, which causes low muscle tone as well as cognitive and developmental delays. Six-year-old Luke cannot walk or talk and has the mental capability of a 6-month-old child.
Because Luke couldn’t ask for his own wish, one of his doctors referred his case to the Make-A-Wish Foundation. After three years of waiting, Luke’s wish was selected. A team of experts consulted with Luke’s parents to devise the perfect wish.
“He not easy to travel with,” Kurt said, “and he doesn’t sweat, so Disney wouldn’t be a good idea.”
“The world is not easy to navigate with kids, especially with a disability like his,” said his mom, Kate Hettiger.
Rather than find a way to take Luke to a theme park—a typical wish from many sick children—the team of wish grantors found a way to bring all the fun to Luke. They converted the Hettiger’s master bedroom into a multi-sensory room, full of stimulating lights, sounds and tactile sensations. The room can also be turned into a calming place by dimming the lights and adding soft music.
“He already loves his light box on the wall and sings to the bubbles. This is better than Disney,” Kate said.
“We brainstormed what Luke’s sensory needs were. That was fun,” said Carrie Salyer, a occupational therapist and co-owner of Leaps and Bounds, a pediatric therapy center in St. Peters. “Luke needs this type of stimulation to develop his perception of the world around him.” Salyer helped design the play aspect of Luke’s room and crafted a special touch-and-feel wall of interchangeable textured panels.
The rocket ship in Luke’s room—which is actually an echo chamber with a mirror on the inside—was built by Peter Schwartz, a principal architect at Vessel Architecture.
“My role as architect was to come up with all the flash,” he said. “We have the coolest oversized light fixture that lights and twinkles. Each piece was custom tailored for Luke.”
Scott Savory of Savory Paint and Design provided the room’s rich colors, and contractor MC-Industrial provided the skilled labor to complete the room. The room took six months to plan, but less than two weeks to construct. Payne Crest Electric and eSpecial Needs also contributed, and Wish Grantors Paulette Bellistri and Mandy Brooks helped coordinate the volunteer effort.
Everyone who worked on the wish donated their time for the project. After the wish was unveiled, the family and team of volunteers celebrated at Maggiano’s in Richmond Heights. Maggiano’s assistant general manager Kelly Braselton said the restaurant sponsors two families for Make-A-Wish each year and raises donations through special events like their “Eat-a-Dish for Make-A-Wish."