Volunteers create dream bedrooms for St. Louis-area kids battling life-challenging illnesses

ST. LOUIS – Christmas Day marked exactly one year since Auggie Powers, 4, was diagnosed with acute lymphoblastic leukemia, cancer of the blood and bone marrow.

Auggie's body doesn't fight infection very well. A high fever will send him to the hospital. In the most intensive part of his treatment, he spent months receiving chemotherapy, blood transfusions and a cocktail of up to 20 pills a day.

But since volunteers transformed Auggie's bedroom into his favorite hangout, he's been able to forget the doctor visits and chemotherapy, unleash his seemingly endless energy and imagination and spend time with the things he loves: firetrucks and trains.

Auggie is one of more than 40 kids in the St. Louis region since 2011 whose rooms have been remodeled by the local chapter of Special Spaces, a national nonprofit that strives to make the bedrooms of kids with terminal or other life-challenging illnesses a special space just for them. The group, consisting of a core of about eight volunteers, remakes rooms for as many as 10 children a year.

"Honestly, the one thing was to try to get back to some sense of normalcy," Doug Powers said. "For a kid that age, not knowing what's going on other than you're going to the doctor every day and then every other day and then spinal taps and you're getting poked and prodded and then medicine makes you go crazy. Special Spaces brought that sense that this is my space, this is my room, I can have fun in here.

"He can go in there and escape, in his own way."

Teresa Hutton, co-director, got hooked on Special Spaces when a professional association she belonged to sponsored one of the charity's first rooms.

"We make it so they can feel safe and special there."

For each makeover's inspiration, Hutton, co-director Keelyn Schwegel and lead designer Julie Haloftis talk to each child about his or her passions and ambitions. They keep their plans for the room a surprise.

Then comes a special Saturday when volunteers send the family out of the house with a fully planned day of events. Other volunteers, meanwhile, put in a nonstop 12 hours of work building the kid's dream hangout spot, from a ninja-warrior room — complete with a rock climbing wall and jungle gym — to a shabby chic urban farmhouse out of HGTV.

Volunteers make special considerations for children's medical needs when they can, from building a shelf to house a breathing apparatus to replacing worn carpet with laminate flooring, helping eliminate dust that made breathing hard for a child with cystic fibrosis.

"You become so much a part of the family's lives," Hutton said. "We truly love giving joy to the kids in the time that they can enjoy it. We know and remember the smiles on their faces when we do their room reveal, and we know that we've brought them joy."

"These children go through so much and the families go through so much, and you know that although you can't take away their pain or you can't heal them or make them better, you can make their home better and make their time better," Schwegel said.

It was a friend of the Stout family who nominated Auggie for a room makeover, his parents said.

"We didn't know any of these people initially, and they just kind of came in on their own wanting to do this incredible thing for our Auggie," he said.