“I want this disease to be spoken about in the past tense. That’s what I want for everybody else—for this disease to be a distant memory.”

Kody’s passion for gaming started as an escape from life outside his apartment complex in Atlanta, which could be rough at times. When online gaming debuted, Kody began meeting people virtually and started forming lasting bonds. “There were people I met there, as early as 2009, and I still talk to some of them now,” he says. They are like family. “We share major life events and occurrences. It’s just like any other friendship, but we happen to live far away.”
Online spaces have opened a world that has otherwise felt increasingly closed to him. “The most difficult part of Pompe disease is the isolation,” says Kody. “Even when I was mobile, it still put limitations on where I could go, or it has made it more difficult, cumbersome, and expensive to go places because I need more equipment.” The lack of a power wheelchair, or the space to utilize one, combined with the progression of Pompe disease, a rare lysosomal storage disorder that leads to muscle breakdown, has left Kody to spend more of his days at home.
From his bed, Kody spends his time surrounded by loved ones. His mother, Daisy, is also his primary caregiver and Duchess, his sister, visits in the afternoon bringing a special guest. King, Kody’s dog, jumps onto his lap and nuzzles him lovingly. Duchess helps take care of the dog, something Kody is eternally grateful for. In fact, she suggested adopting King, knowing well that her brother would not have the ability to take care of him on his own. To say the least, her work has paid off. “He has been everything I could hope for and more,” says Kody. “He is perfect, obedient, unconditionally loving. He has helped me fight off depression, just having him around.”