ABC’s Extreme Makeover: Home Edition features Kennedy Krieger Patient
It’s not often that a hospital is approached by the producers of a major television program and asked to put together a wish list of amenities that would help create a dream home for a patient paralyzed in all four limbs. Or for that experience to be captured on camera and shared with millions of viewers across the nation.
It is, in fact, almost never. Still, it’s the kind of dream world in which reality television thrives. And it’s a dream world that came to life for 24-year-old Kennedy Krieger Institute spinal cord injury patient Brian Keefer, when ABC’s Extreme Makeover: Home Edition selected his family to be featured during its ninth season, in an episode scheduled to air on Friday, October 21 (8 p.m. eastern). But Keefer and his family weren’t the only ones amazed by the once-in-a-lifetime experience: Members of his Kennedy Krieger care team were also thrilled by the possibilities introduced by the show, whose popularity, along with Keefer’s incredible story, induced various manufacturers to donate items —including expensive equipment and amenities that most patients could never afford for their homes.
“When the show first contacted us and let us know Brian was being considered, they asked us what equipment we would recommend to design the therapy room of his dreams,” recalls Nikia Stinson, one of Brian’s outpatient physical therapists. “And how would we remodel the house to make it most accessible for him, so that he could be as independent as possible? The producers were very open to any suggestions we had. They said the sky was the limit—if we could do anything, what would we do?”
‘The Very Best’
To best answer that question, Brian’s care team in the Institute’s International Center for Spinal Cord Injury—including Stinson, occupational therapist Jenn Silvestri, aquatherapist and occupational therapist Kim Obst, physical therapy assistant and aquatherapist Kim Rotondo, adapted aquatics manager Christy Sachs, and physician Daniel Becker—gathered together and brainstormed over what kinds of therapeutic equipment would be ideal and best meet Brian’s current and long-term needs and goals? The resulting list, Stinson says, was extensive and had to be toned down a little. But in the end, she continues, the show procured an enviable range of therapeutic equipment and tools for a patient who deserves the very best.
That includes a bodyweight support harness that moves along a special track throughout parts of Brian’s home, allowing him to move independently, and a voice operated system that allows him to open and close doors and do other tasks through vocal commands. Even more impressive, however, is the HydroWorx therapy pool, similar to those used by Kennedy Krieger’s aquatherapy program. It is especially rare, says Obst, for patients to have their own therapy pool, complete with an underwater treadmill and lift system so that Brian can navigate himself in and out. “These pools are really expensive and just for the installation alone you need a good set-up,” Obst says. “So it’s pretty uncommon and a neat thing for Brian to have.”
As it stands now—highly accessible, with state-of-the-art equipment like the voice activated command systems–the Keefer’s home is strikingly different from what it was before the ‘Extreme Makeover’ bus pulled into their York, Pa., neighborhood. While his family did have an outdoor swimming pool with a lift, the aquatherapy pool is specially tailored to his therapeutic needs and will allow him to exercise indoors in cold weather. Also, Brian’s previous bathroom was small and hard for him to navigate, and he wasn’t able to negotiate his wheelchair through the family’s kitchen, says Silvestri. “He was limited to the first floor, and even then, only certain parts,” she says. “Now he basically has his own wing. It’s almost like an apartment, and it’s his space. He has his own front door that he can answer by himself, a vehicle that he can use, access to a therapy gym, and his own bathroom where he can have a regular shower.”
A Special Place
Kennedy Krieger’s involvement in filming the show wasn’t limited to offering advice. The Institute also welcomed the program’s film crew twice during the process—once to tape Brian doing therapy and again for an “inspiration visit,” to meet patients and staff at the Institute and learn about what makes it so special. Meanwhile, Becker helped the show plan and coordinate a family vacation to Colorado—the family’s first real vacation since Brian’s injury—while the home renovations were taking place. When they returned, therapists joined Brian and the film crew for a sailing adventure day, helping him to board and disembark from the boat and monitoring his comfort throughout the experience.
And, when the big day finally came, more than 30 Kennedy Krieger staff members were standing right up front watching as the family got their first look at their remodeled home. “The reveal was awesome,” says aquatherapist Kim Rotondo, who was there that day. “They treated us like celebrities, and people in the crowd actually cheered for us.”
Even the crew and stars of the show were enthusiastic about the Institute and its role in Brian’s care. “The work that you do at Kennedy Krieger is amazing and I am so lucky that I was able to see it first hand,” said cast member Paul Dimeo, a designer who played a primary role in the remodeling of the Keefer home. “It really is a special place.”
In addition to Dimeo, staff members had the opportunity to meet other celebrities involved in the show, including Jillian Harris, who starred in the fifth season of ABC’s The Bachelorette, and show host Ty Pennington. Also playing an on-camera role on reveal day was Kennedy Krieger’s own Patrick Rummerfield, a world-renowned triathlete, racecar driver, and motivational speaker who is also the world’s first known individual to regain full function after a spinal cord injury rendered him quadriplegic. But, of course, the real stars of the day were the Keefer family—namely Brian.
“I believe all of my patients deserve the best,” Stinson says, “but of all the families I’ve worked with, he has one of the best outlooks on life I’ve ever seen. It was amazing to see him get this gift and see him enjoy and benefit from it. He works really hard and does everything you ask him to do. We know he’s really going to use everything provided for him.”
As enthusiastic as his therapists are about Brian and his family’s hard work, his family is just as appreciative of Kennedy Krieger. Seeing his team of therapists standing there in Kennedy Krieger shirts—and carrying Team Keefer signs—when the famous Extreme Makeover: Home Edition bus pulled away was hugely comforting, says his mother, Dawn Keefer. “I can’t say enough about his therapists and Kennedy Krieger,” she says. “When we saw those Kennedy Krieger shirts, it just gave me a really warm feeling. Those were people we knew and connected with. To have them there was so important.”
Long after the bus had rolled away and other volunteers had gone home, the Kennedy Krieger team stuck around with the producers and camera crew, helping Brian use his therapy pool and filming until well after midnight. “Their dedication and willingness to give up their time and spend it with us was so touching,” Dawn continues. “I’m sure they were tired and had other things to do. It was so special that they would give of themselves like that.”
A Fantastic Place for a Fantastic Family
From the very beginning, Brian’s optimism and hopeful spirit inspired not just his family and therapists at Kennedy Krieger, but his friends as well. “The family didn’t even nominate themselves for the show,” Silvestri says. “A friend of Brian’s at school went through the nomination process anonymously.”
The family’s perseverance in the face of Brian’s spinal cord injury is indeed second to none. His father, Steve Keefer, quit his job so that he could help his son attend college full-time. Likewise, his family drives several hours so that Brian can attend outpatient therapy at Kennedy Krieger for two weeks, twice a year.
“His family is absolutely amazing,” says Silvestri. “They do everything they can to take care of Brian.” The house, she says, will give both Brian and his family the opportunity to live with more freedom and independence.
“As a 24-year-old guy you don’t want your parents with you every second of the day,” she continues. “And now he’s able to participate in some of the basic things that most of us take for granted. He can change the channel on the TV, he can answer the door and get himself a drink. He doesn’t have to call mom or dad every second to get a glass of water.”
For his own part, Brian is enjoying and making the most of his remodeled home. Though he’s currently finishing his senior year at college, he returns home whenever possible, and will continue living in the house after graduation.
“I know this is going to help me have a faster recovery,” Brian says. “The pool is fantastic and the house is amazing. It’s a fantastic place to live. I have so much more independence. I can’t say enough about it or the people from Kennedy Krieger.”
Don’t forget to tune in for this special episode of Extreme Makeover: Home Edition -- Friday, October 21, 2011, 8/7 c on ABC.