The 10-year-old from Rothsay, Minn., suffers from Spinal Muscular Atrophy (SMA), a genetic disease affecting motor neurons in the body. For his entire life, Cole has been confined to a wheelchair and communicates strictly through his eyes. He cannot speak or walk, and relies on a feeding tube through his stomach. SMA is the No. 1 killer of children under 2 years of age.
His father, Rick Fiedler, is running a half marathon during the Fargo Marathon Saturday to spread awareness of the disease. The event will benefit Families of SMA, an organization he and his family are part of. Out of the three types of SMA, his son suffers from Type 1, the "worst kind."
 The entire student body of Breckenridge High School spilled out into the community Wednesday for what they call a Day of Caring. Students set aside the day to provide service work and thank the community for their support. In the foreground, Justine Banken, a junior, digs around a small shelter near The Pavilion Restaurant in Breckenridge. Senior Peter Nelson helps dig to the right. Daily News photo by Jennifer Johnson. Advertisement |
Fiedler discovered Cole had SMA when he was about 5-weeks-old, after Fielder and his wife, Dori, noticed a lack of movement in his limbs. Two days later, Cole stopped breathing. Fiedler gave his son CPR and Cole was rushed by ambulance to the emergency room at MeritCare in Fargo.
"They put him on a ventilator and a feeding tube," Fiedler said. "He's still on one today."
The disease strikes approximately one in 6,000 babies and about one in 40 are genetic carriers. If two carriers have the same gene, their children have a 25 percent chance of getting the disease. Fiedler has three other children, ages 6 to 16, and they are healthy.
Cole is connected to a ventilator, a carbon dioxide monitor and a pulse oximeter, which measures his heart rate and pulse. Every night, he wears an apnea monitor and three nurses assist the family on a 24 hour basis. Cole is brought to the doctor twice a year for a "tune up."
"I think our doctor is very amazed at Cole and the progress he's made," Fiedler said.
While the family can take Cole any place wheelchair accessible, they have to be mindful of his battery-run ventilator. As SMA has taken away his ability to express emotion, his family has learned of other ways to understand him.
"If he likes what he's watching or what you're doing, he'll just focus on you," said Fiedler. "If he doesn't like what you're doing, he'll just roll his eyes up and not even watch. I think he can comprehend most anything; he's a very bright boy."
In the summer, he enjoys being taken for a walk and to the zoo. He's also a big fan of the Minnesota Twins. His focus on the TV during the games is "unreal," Fiedler said.
His son also attends school in Rothsay and sits in the classroom with the other children. During the cold and flu season, he is homeschooled.
"The kids just love him," Fiedler said. "They don't think anything different of him. They accept him very well."
Patty Kloster, a family friend and Cole's godmother, recalled his keen sense of memory. One night, when he was about 3-years-old, Kloster promised she would rock him to sleep. Several hours later, his mother Dori wound up rocking him and Kloster was holding his younger sister, Victoria. Cole could not get to sleep.
"Then he switched, and he went right to sleep," she said.
Kloster said she feels fortunate to have Cole in her life, as he has taught her not to take things for granted.
"It's a very devastating disease," she said. "But in the same breath, to have Cole in your life is a huge reward. It's a tough thing, but it's a huge reward."
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