On a sunny morning in Burien, a little girl with strawberry blonde hair and a huge grin zips through the front door of Children's Therapy Center with just the touch of a finger on her wheelchair switch. In just a few short months, Charlee has virtually mastered the chair, which at 370 pounds weighs nearly ten times what she does. “She’s the youngest child I’ve worked with in a motorized chair,” says her physical therapist Sara. Exactly how young is Charlee? Not even three years old.
Charlee was born in Ketchikan, Alaska, with respiratory failure, broken bones, and other as-yet undiagnosed conditions. After 12 hours in the hospital in Ketchikan, Charlee was airlifted to Seattle Children's with her father, Joel. Her mother, Ashlee, spent a mere 30 seconds with her newborn daughter before she left.
Once the family was reunited in Seattle, reality hit. “People like us in the military are pretty open to adapting, but this was like putting our life in a paper bag and shaking it,” she says. “We were thrown into this world of drastic special needs. We’ve had to do so much learning – the terminology, the doctors, how to use the medical and home care equipment. When to go to the doctor, and when to stay home. Learning her unique signs and symptoms. It’s been a lot.”
Charlee was enrolled in Early Intervention at Children's Therapy Center where she has received physical and feeding therapy. She also attends a weekly playgroup at CTC with other children. “That’s her favorite – she talks a ton there. I call her ‘Queen of Playgroup’ because she answers any and all questions, even from across the room. It’s nice that she has control over something in her life.”
Charlee’s undiagnosed condition – which could be neurological or muscular – doesn’t bother her mother. “My husband would prefer to know, but I don’t,” she says. “The way I see it, the moment you’re diagnosed you’re in a box. Charlee doesn’t have a box. We never get told what she ‘can’t do.’”
Ashlee smiles as she watches Charlee maneuver her chair over to a colorful bulletin board that has caught her eye. “That chair could take down an entire fence!” she says. “And that’s a 2-year old driving it!” She allows Charlee to drive most of the time but keeps close tabs on her. “We practice everywhere – Costco, the mall, Ikea. The only thing that we sometimes have trouble with is tight aisles in stores.”
Sara attributes Charlee’s navigational ability in part to her natural smarts but also to the efforts of her parents. “They are truly remarkable people,” says Sara. “They are so invested in her and in helping her achieve!”
Charlee’s “purple chair,” as her mother refers to it, cost more than both her and her husband’s vehicles combined. “She can’t use any old chair because she requires so much support,” Ashlee says. “We have to take it with us everywhere. I never realized what a shortage of disabled parking spaces there is!” Retrofitting their family van with a wheelchair lift proved incredibly frustrating. “There was so much specificity involved. And we found that many lift companies don’t even take insurance.”
Ashlee is grateful for the insurance her family has from the military. “I have no idea how we’d afford it without that,” she says. “I don’t know how anyone does.” She plans to donate the chair when Charlee outgrows as a way to help other families.
Ashlee wants to continue therapy at CTC for Charlee even after she ages out of the Early Intervention program, particularly feeding therapy and aquatic therapy. “It’s amazing to watch her move when she’s weightless. Her arms and shoulders are weak so the movement in the water helps strengthen them.”
“Charlee has made so much progress here. It’s been wonderful to have people to talk to at CTC who are immersed in the world of special needs,” Ashlee says. “It makes our lives easier.”