A courageous boy battling a life-threatening disease receives a bedroom makeover.
- Posted on Jul 5, 2011
Kara and John Grady weren’t daunted by challenges. They were a Navy family, after all. They held fast to their faith and forged on.
That’s how they’d managed during John’s deployments in Iraq. That’s how they coped with their youngest child’s Neurofibromatosis-1, a disorder that causes tumors in the tissue surrounding the nerves, in his case with life-threatening complications.
At age five, Charlie had developed an inoperable brain tumor that grew around the optic nerve and made him blind in his right eye. Fifteen months of chemotherapy later, Kara and John hoped their son was in the clear.
But the doctors said his next MRI scan showed three new brain tumors. Charlie, now 7, needed 50 more weeks of chemo. This time, even the Gradys were shaken.
Nothing dimmed Charlie’s spirit, but the chemo sessions wore him out physically. He spent a lot of time in bed, and his family wanted to do something to brighten his room. They couldn’t afford to remodel though.
So Charlie’s grandmother Carol, who’d read in Guideposts about the miracle home makeovers I’d done, e-mailed me. I’m an interior designer, and I do these inspirational projects free of charge, with the help of generous donations and hard-working volunteers.
“The last time Charlie did chemo, his daddy installed a train track around his bedroom because he knew how happy it would make him,” Carol wrote. “But the train can’t run anymore because the plastic track supports have warped.
"We all feel like we’ve had the wind knocked out of us after hearing about the new tumors. I don’t know if we’re up to getting Charlie’s train running again. Do you think you could help?”
A new train track? I could do that. I called the Gradys and found out more about them. Kara and John were both Navy vets and still full of faith even after what they’d been through with Charlie’s neurofibromatosis. They told me he has an 8-year-old brother, Liam, who shares his room, and a sister, Katie, 13. “It’s Charlie who keeps our family upbeat,” Kara said.
He’d started an annual toy drive—Charlie Santa Day—where he collects toys from family and friends and distributes them to kids at St. Louis Children’s Hospital. “Charlie believes he was put here on this earth to help others,” John said.
I asked them to e-mail me pictures of Charlie’s train tracks. When I saw what his bedroom looked like—chipped paint on the walls, old roller shades, worn-down furniture—I knew I had to do more than get his train running again.
“We could totally remake his room, don’t you think?” I said to my staff. “It should be a space that’s positive and fills him with hope.”
I started with Charlie. “What do you like best?” I asked.
“Thomas the Tank Engine,” he said. I should have guessed, I thought. Charlie and Thomas were both like The Little Engine That Could.
Turned out Charlie also loves trucks. All kinds—dump trucks, Hummers, garbage trucks—anything big and noisy that rumbles on four wheels. His dream, he confided, was to run his own truck-repair shop. Maybe we can create some kind of theme that connects trucks and trains, I thought.
First, we needed to find out which colors spoke to Charlie’s heart. “Charlie, did you hear that the whole world is like a big coloring book,” I said. “Light rays are like crayons that color things differently.”
Charlie bowed his head. Seconds later he said, “Orange-red! Like orange juice and greenish-blue and bluish-white! This is so cool!”
Charlie could really help me bring his room to life. Next, I sketched out a cartoon, called Charlie’s Repair Shop, about a mechanic’s shop that fixed huge trucks, all delivered by a freight train.
“Color it in for me,” I said. I didn’t tell him how I planned to use it. Quickly he handed me the finished product, our template for the redo. I don’t think I’ve ever left a design meeting so inspired!
It took our construction team three days to transform Charlie’s room. Most of the volunteers came from McCarthy Building Companies, a national commercial construction firm where Charlie’s dad works. “McCarthy Heart Hats” they called themselves, and I saw why. They put heart and skill into their work.
We ripped up the old carpet and replaced it with new wood flooring, so Charlie’s beloved dachshund Hauns could stay with him (easier to clean up the aging dog’s accidents). On the wall, ceiling and furniture we painted using Charlie’s “heart colors” and we put up a Thomas the Tank Engine mural.
Between the windows, we hung a sign: Charlie’s Repair Shop. To make the room look like a real repair shop, we used a mechanic’s tool chest for a dresser. We installed a pair of corrugated aluminum panels as window awnings. We made a desk with a tabletop set on sawhorses.
The key elements were the bed designed as a huge truck and the Thomas the Tank Engine train on its track.
“It’s perfect!” Charlie said when he and his family walked into the finished room for the first time. His bed was fitted inside what looked like a giant dump truck, complete with a steering wheel, rearview mirror and odometer.
“Crawl underneath,” I said. Charlie got down on his hands and knees, climbed upon an authentic mechanic’s dolly and shimmied beneath. “Awesome,” he said.
High above his head, almost to the ceiling, a freight train ran and whistled around the room on a sturdy metal track. Charlie grinned like a kid without a care in the world.
Liam and Katie were grinning too. Not only for Charlie. We’d remodeled their rooms as well. Their brother’s illness had been hard on them. They deserved a feel-good present of their own.
Liam’s favorite movie is Tron, so we built him a loft bed with his own “Tron station” underneath, including a futuristic, half-moon-shaped white chair on rollers, desk and chalkboard.
For Katie, who was born in Italy when her parents were stationed there and loves all things Renaissance, we installed a dreamy four-poster canopy bed with pleated white curtains, soft pillows and shelves for all her books on music and art.
That first night in his redone room Kara and John asked me to tuck Charlie in. He lay back in his bed and I smoothed the comforter around him. Charlie looked up at me and said, “I love my new room. Thank you so much.” Really I should have thanked him. All I did was make his room as bright and inspiring as he is.
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