A Steampunked Wish
A unique wish results in a one-of-a-kind bedroom for a young teen.
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The Responsibility Project
When representatives from the Make-A-Wish Foundation asked Kyron Cheek for his wish, the ninth grader and gamer said he’d like to have his bedroom steampunked.
This request baffled Lauren Cotter, Program Service Manager for the nonprofit’s Massachusetts and Rhode Island chapter, who had fielded many requests for room makeovers for Super Mario Brothers or Dora the Explorer. But, as Cotter explains, “I had no idea what steampunk was.”
Steampunk, a kind of science fiction-based aesthetic that blends steam-powered machinery with modern-day technology, isn’t unique to Kyron, who is wheelchair-bound from Duchenne muscular dystrophy. Kyron was recommended for Make A Wish in 2011, shortly after he went to the hospital for back surgery. The surgery was not unusual for someone with Duchenne’s -- but something went wrong.
Kyron’s lungs collapsed and he was in critical condition for 16 days. After his recovery, he was told about his wish. “Ky had been nominated because he had fought so hard and did such a good job,” said Angie Cheek, Kyron’s mom. He refused at first, telling the foundation that he had survived and therefore didn’t need a wish. “It took about a year and a half to convince him that he deserved it, and we finally talked him into it by telling him this is making everyone else happy,” Mrs. Cheek said. That’s when Kyron shared his dream for having a steampunk room.
Cotter reached out to her network of volunteers and was introduced to Bruce Rosenbaum, who had been described to her as someone who eats and drinks steampunk. “He had such enthusiasm and was so excited to help us with this wish that I knew he would be great.”
Many know Rosenbaum for his 2011 appearance on “MTV Cribs” along with his 17-year-old son Daniel, as they guided the viewer through a tour of the interior of his steampunked Victorian home, complete with a home office that included a World War II battleship telephone and a computer made out of a restored organ. Rosenbaum also runs his own steampunk interior design company called ModVic (Modern Victorian).
“Kyron loves the real technology, and I wanted to give him products that helped him have more freedom and independence, and this gave me more passion for working on this project,” said Rosenbaum.
Rosenbaum identified strongly with Kyron’s dream, as he also came to steampunk after a serious illness. “I was diagnosed with Hodgkin’s cancer in 1989 and went through nine months of chemotherapy,” said Rosenbaum. The cancer came back three years later. Rosenbaum was in the hospital for six months and close to death. Only after bone marrow surgery did he make a full recovery.
Rosenbaum and his wife Melanie bought a house quickly after his recovery. “I did a couple of installations,” said Rosenbaum talking about his restoration of an antique JL Mott’s Defiance Stove he found at a fair and fitted with a high-end electric cooktop. “I loved it and bought an Old Victorian house to do a steampunk modernization, “ said Rosenbaum enthusiastically. The cancer, as Rosenbaum describes, had boosted his sense of urgency to do the things he loved. “The bigger picture was learning how to refurbish, restore and install. It was my steampunk 101.”
Rosenbaum speaks admirably about Kyron, whom he describes as a bright kid living his life without complaining. Rosenbaum comes over to the Cheek’s house regularly for installations, this time bringing a dusty microscope from a box to show Kyron and describing the functions and all that he can do with it; they both light up. “They’re kindred spirits with their love of steampunk,” said Cotter.
“A lot of the stuff was really creative and simple to add to the room, but the functioning items needed to be designed and engineered.” Rosenbaum created a steampunked Victorian desk that lowers down into Kyron’s lap. The desk gives Kyron independence to do gaming early in the morning by himself. They had some initial complications learning how to lower the desk, but after looping in a mechanical engineer and electrician, they realized a remote control would be easiest for Kyron to use since he has limited mobility in his arms.
At first glance, the lives of Kyron, his mother, father, and his 17-year-old sister Zoey are not too different from the lives of other families. On a summer afternoon in August, the two siblings were watching Rosenbaum bring in boxes of old antiques for Kyron’s Cabinet of Curiosity in their one-story home in Florence, Mass. Kyron scoped out the new products and listened intently to Rosenbaum’s descriptions of the pieces. Zoey leaned over his wheelchair and picked up the items that Rosenbaum placed in front of them.
“My room is really cool," said Kyron, whose bedroom now has a brass door with a submarine window, a spaceship-shaped cabinet full of treasures from the past, and colorful murals showcasing scenes of his favorite video games.
"It’s been a busy time, but we made it," Mrs. Cheek later reflected during Rosenbaum’s visit. "Make-A-Wish has done so much for my child." The pride and struggle was apparent her face – the look of someone eternally grateful.
Melissa Pocek is a freelance writer/photographer her work has appeared in Harvard University's Program of Negotiation, Venture Fizz, Tech Cocktail, Oxfam America, Uber, and Boston.com. Her journalism has covered national issues, technology, and professional profiles. For more about Melissa please visit: www.melissapocek.com