Monday, January 14, 2013
When Dori Reafler wants something, she holds out one of her hands and makes a fist over and over again.
Dori, a 4-year-old Mount Pleasant girl, is diagnosed with CASK gene mutation – a rare disorder with only about 20 known cases worldwide. It causes a global developmental delay, so cognitively, she is about 18 months old, according to her mother Whitney.
The mutation causes a number of complications. None of the CASK cases have developed verbal language, for example, and a diagnosis of autism is part of the package. It is also responsible for cognitive delay and poor balance and coordination.
“She has one sign language that she made up,” Reafler said, describing the squeezing motion she does with a hand. “That’s the sign for, ‘more,’ or ‘I want’ or ‘give me.’”
Whip out a camera and Dori will make the motion over and over again. “She enjoys anything that lights up and makes noise,” Reafler said. “She totally loves animals, especially kitties.”
Dori seeks attention just like other children her age and shares a feeling of adoration for her big brother, Dylan, who is 8 years old.
She leads a busy life with physical therapy sessions once a week, occupational therapy once to twice a week and speech therapy every other week. Dori also stays on the go by attending Dylan’s soccer games and being a recognizable face all over town.
“She’s famous,” Reafler said, smiling. “I’ll be at Target or something, and people will come up. They don’t look at me. They’ll say, ‘Hey, Dori!’ I’m like, ‘Who is this person?’ They’ll say, ‘I know Dori through such and such,’ and I’ll be like, ‘Okay, well, I’m her mom, how are you?’
“Wherever we go, everybody knows Dori. It’s actually really funny.”
In a world that could easily be seen as playing against her, Dori loves her surroundings. In our fast-paced environment, a fun-loving child with a cognitive delay is up to speed in more ways than many able-bodied people.
She welcomes fast things, and naturally, she’s quick to flash a smile. “Even in the wheelchair, if you run with her a little bit, she loves it,” Reafler said. “She loves to go fast.”
Now, thanks to the efforts of local non-profit organization Racers for Pacers, Dori will have a new source for going fast. Racers for Pacers provides running chairs to disabled children. The chairs are specially designed and resemble an elongated wheelchair with three wheels. The child sits in a seat above the two back wheels, and the assigned runner pushes the chair from behind.
Racers for Pacers is coming into its own, and was first affiliated with Pattison’s Academy and called Pattison’s Pacers.
“The goal is to match children with pacers,” Sean Glassburg, founder of Racers for Pacers, said. “She’s the runner, and I’m the pacer. I look at this as an opportunity for the kids to run even though they’re not using their legs. They’re still out there and getting that same sensation.”
Glassburg got connected with the Reaflers after his daughter met Dori in Laurel Hill Primary School preschool intervention class, which pairs kids with disabilities and those without.
“His daughter sort of took a liking to Dori right off the bat and invited her to her birthday party,” Reafler said. “She totally just loved being with Dori.”
Glassburg felt motivated to do a good deed. “A few years ago, I came across the story of the Hoyts,” he said. “I was really moved by that story, so I made it a goal of mine last year and raised money through friends and family (to buy running chairs).”
Dick and Rick Hoyt made national headlines as a father-son tandem who participated in numerous marathons and triathlons. The son, Rick, has cerebral palsy. The two, commonly referred to as Team Hoyt, was inducted into the Ironman Hall of Fame in 2008.
Rick communicated with a special computer and famously told his father after participating in their first competition: “Dad, when we were running, it felt like I wasn’t disabled anymore,” according to a 2005 Sports Illustrated article.
With Dori’s running chair, it helps her to do something she loves, as well. “She can take in a lot more around her when she’s still,” Reafler said. “To put her in the chair and move her fast, she’s constantly sensory seeking, and this gives her sensory input but in a calm state, rather than actively seeking it.”
A couple weeks ago, Dori saw her chair for the first time. This is the part where Dori extends her arm and makes a squeezing motion for the chair, right?
Discard any preconceived notions for how stories are supposed to progress. Dori isn’t a typical kid, so there’s no criteria to follow. The only context in which she can be described as ordinary is when “extra” serves as a prefix.
There was no squeezing motion, but that’s not to say she doesn’t love her specially-designed chair. The story doesn’t end at the chair, so perhaps Dori wants something more than just the chair. That’s where the story begins.
“I’d love to say, because it sounds good, that she was doing that, but she wasn’t in a hurry to get out of the chair,” Reafler said, describing her initial reaction. “But, it’s hard to know sometimes.
“It was more like we got her out of the chair; it was time to go, I was like, ‘C’mon, Dori we have to go,’ so I didn’t really give her a chance to show me that she wanted to go back and do more.”
Now, Dori has plenty of time to do more. Glassburg plans to run with her twice a week. Glassburg ran with another local disabled girl named Katherine in the annual Bridge Run, and this year’s event could again serve as a milestone for another young girl.
“Racers for Pacers happened because I bumped into Sean pushing Katherine in a chair as he was about to start the 2011 Cooper River Bridge Run,” Mel O’Keefe, whose title is Coach Mel within the program, said. “I’ve been involved in numerous charitable organizations such as Team in Training and The Challenged Athletes Foundation and thought that this would be a great opportunity for Sean and I to create our own program. Things just blossomed from there.”
That’s when the single good deed that Glassburg wanted to do became a source for repeated efforts with disabled youth in the community. O’Keefe’s role is making sure all the participants are properly prepared and equipped for training, including cross training and nutrition. Pacers are divided into three levels of ability: accomplished runners, those who have completed 10k races and then, the novice level.
Glassburg is an accomplished runner, having finished five marathons. When he and Dori first did a practice run together in the Reaflers’ neighborhood, Dori sat content in the chair. She clutched a toy in her hands to distract her from reaching out and grabbing the wheels. And when Glassburg started running, she shook her hands in a flapping motion. Reafler said that’s another sign she created to show happiness.
“If she doesn’t want to be somewhere, she’ll let you know,” Reafler said. “The fact that she was like, ‘Huh, all right, I’ll go with this man. Where are we going?’ That’s a good sign that she liked it.”
There are a few goals of Racers for Pacers, besides providing kids like Dori with a feeling that Rick Hoyt had. The organization hopes to reach foundation status to establish more credibility. And, O’Keefe hopes to gradually increase the level of running. “Sean and I think there is a demand for the Bridge Run and will definitely be training for it,” he said.
“Our hope is that coaching participants to compete in a 10k will create the momentum for them to step up to the next obvious level of running a half marathon, followed by a full marathon.”
When Glassburg and Dori returned from their practice run, Reafler and Brittney Williams, a “super mom who is with us all the time,” as Reafler describes, got up from couches in the living room to greet the returning athletes.
“How was she?” Williams said as Glassburg, holding Dori in his arms, stepped into the room.
“She was perfect,” Glassburg said, “absolutely perfect.”
Thing is, that’s still not an ending. It’s more like a chapter, and Dori writes the rest.
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