Wheelchair-bound Elmhurst teen in state pageant
Devin Davis tries not to let anything get in the way of her dreams — least of all, her wheelchair.
The 19-year-old Elmhurst woman is a state finalist in the National American Miss Illinois state pageant, which will be held this weekend at Pheasant Run Resort in St. Charles.
She's also an aspiring actress and model who has engineered meetings with many of her favorite celebrities — Justin Bieber, the Jonas Brothers, the Black Eyed Peas — not to promote herself, but to slip them a DVD she created to raise awareness about rare muscle diseases.
“I want to be a role model for others like myself,” Davis said, “to show them no matter what you situation is, you can and should still dream big.”
Davis was diagnosed as a baby with mitochondrial myopathy, a progressive disorder with no cure or treatment. Damage to the mitochondria — the “power plants” inside cells — wreaks havoc on the muscles, the brain, the respiratory system.
As a child, she was in and out of the intensive care unit at Children's Memorial Hospital in Chicago. At one point, her doctors didn't think she'd live past the age of 5.
“I can't tell how many times the pastor said we're going to say our last goodbyes, and she keeps coming back,” said her mother, Dawn Davis.
As a preteen, Devin had risky surgery for scoliosis that successfully reduced the curve of her spine from 70 percent to 20 percent.
Yet, despite her health challenges, Davis graduated from York Community High School in Elmhurst and the Illinois Center of Broadcasting, was signed by a talent agency (she has received scripts for “CSI” and ”Melissa & Joey”), and worked so many hours as a volunteer at Elmhurst Memorial Healthcare that she received the city's Character Counts Award.
Then last spring, while she was hospitalized for pneumonia, her doctors dropped a bombshell.
A recent biopsy and better diagnostic tools led to a new diagnosis, still extremely rare, affecting 1 in 500,000 people, and with an even more difficult name: familial limb girdle myasthenia syndrome DOK7. In simplest terms, the signals to her nerves become weakened as they pass through various “junction boxes” in the body.
The news was shocking, but also a cause for hope: The disorder, caused by a genetic mutation, is treatable. Davis is participating in a clinical study of oral Albuterol, and also does physical therapy. She started showing results within a few days.
She can raise her arms higher, doesn't need to use her breathing machine for so many hours at night and can even take 60 to 80 steps.
She hopes to be able to walk some day, but “even if I stay where I'm at right now, I'm fine,” she said.
She'll wear a royal blue dress for the pageant's formal wear competition, but the National American Miss pageant emphasizes inner-beauty, poise and presentation, not glamour.
Davis hopes her own example will help open doors for, and inspire, other people with disabilities.
“It's nice to be able to impact people's lives,” she said.