Louisville Magazine

AUG 2018

Louisville Magazine is Louisville's city magazine, covering Louisville people, lifestyles, politics, sports, restaurants, entertainment and homes. Includes a monthly calendar of events.

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LOUISVILLE MAGAZINE 8.18 81 when he was born. No two doctors told his mother, Wendy Dickens, the same thing. "ey at first thought he was having seizures. en they thought it was strokes. At one point they told us he had leukemia," she says. He was developmentally delayed. "He didn't walk until he was 18 months old. He didn't say words until he was four. He didn't talk in sentences so that you could understand him until he was six or seven. We were in and out hospitals with pneumonia, bronchitis. He had migraines. We could just not keep him well." When Trayce was 10 years old, he began losing his hearing. en his vision started to go. ey made an appointment with a neuro- ophthalmologist in Louisville, who spent 30 minutes examining Trayce. en, for the next 3½ hours, he repeatedly sent a nurse into the room with more questions about Trayce. "I think he just saw the helplessness," Dickens says. "I didn't know what to do anymore. I think he just had a heart." Trayce was only 63 pounds and slept 18½ hours a day. He had deteriorated so badly that Dickens worried she was about to lose her oldest child. Four hours after they arrived, the doctor returned to the exam room and handed Dickens a piece of paper with his assessment. From what the doctor could tell, the little power packs inside of every cell — organelles called mitochondria — weren't working right. It's a devastating diagnosis. It isn't simply one organ system that's off, or one bodily function. It is a malfunction of the body's most basic machinery that every organ and system requires for life. e diagnosis came the year after Trayce's hero, his uncle Army Sgt. Michael Cable, was killed in Afghanistan. Cable, Dickens' youngest brother, was 26 years old. Somehow, the family thought that when Cable made it unscathed through his Iraq deployment, Afghanistan wouldn't be a problem. "When he was in Iraq, we worried the whole time," Dickens says. But they convinced themselves Afghanistan was no big deal. In the fog of magical thinking, they told Trayce that his uncle wasn't in harm's way. "When we found out, it was just crazy, when he was so close to coming home!" Dickens says. "It really just rocked Trayce's world," Dickens says. "He was so confused since we told him it couldn't happen, and then it did." Cable could get Trayce to do anything. One effect of Trayce's disease is that eating can be difficult. He has trouble absorbing nutrients. But if he doesn't eat, it can bring on life- threatening problems. When Cable was home from Iraq, Trayce was refusing to eat. So Cable bought him food from McDonald's. "He told him it came from the Army. Of course he ate it. He thought everything Michael did was magical," Dickens says. Dickens' family is remarkably close. Not only does Trayce's dad go to all doctor visits with her (they're no longer together), so do her parents. As the family tried to understand the implications of the new diagnosis, Dickens' mother recalled a conversation she'd had with someone from Army Survivor Outreach Services after Cable was killed in Afghanistan. ey had offered the family an emotional-support dog. Dickens wondered: Could they instead provide a dog to help Trayce? With the help of Mark Grant, then with Outreach Services, Dickens applied for a service dog. Tommy arrived in February, just as Trayce was recovering from surgery to put in a gastric feeding tube, an ordeal that had depressed the normally upbeat boy. "It could not have been better timing," Dickens says. And boy and dog were almost instantly inseparable. "e first week, it cracked me up, but every time Trayce would take a shower, Tommy would lay at the bathroom door and whine," she says. ey finally let Tommy stay in the bathroom with Trayce. ey had to move Tommy's crate so he could see Trayce at night. "Before Tommy, I was not a dog person," Dickens says. "I was a little nervous. I never had a big dog in the house. He's just like a kid now. He knows he can come and get us if he needs something. If I'm in my room and Trayce is crashing, he lets me know. ey picked the perfect dog for him." With Tommy at his side, Trayce is making friends at school for the first time. One day, he came home with phone numbers for two girls in his class. "It's increased Trayce's confidence," Dickens says. Tommy can pull Trayce in a wheelchair, retrieve things off the ground and help him get up when he needs help. It has made their frequent doctor visits easier on Trayce; they often have two or more appointments a week with doctors in Louisville, Cincinnati, Toledo, Atlanta and Nashville. With Tommy along, Trayce no longer hates the visits. He loves introducing his dog to his doctors. Dickens' two other children also tumble and play with Tommy. Her youngest, six-year-old Trevor Johnston, also has mitochondrial disease, so he has his share of doctor visits too. Her daughter, 10-year-old Brianna Dickens, is healthy. Dickens pointed out her daughter's blue hair. "She never asks for anything. I feel guilty — for about a third of her school year we were gone. So when she asked if she could dye her hair blue, I said yes." In Tompkinsville, people were so interested in how Trayce and Tommy were doing that the family had a community barbecue. "When I worked for a diner in Summer Shade, we had customers who followed the whole story. ey were so happy for Trayce. ey really wanted to meet Tommy. at's the difference in a small town — people here treat us like family." Recently, the family completed plans for Trayce's Make-A-Wish trip to Disney World. Tommy will be allowed to ride any ride without height requirements. For one night of the trip, they'll be in Daytona Beach. "Part of Trayceton's Make-a-Wish was to take Tommy to see the ocean," Dickens says. "Trayce has seen it, but he wanted his dog to see the ocean."

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