Abbie Evans is a dynamo. In Cary Bell’s affecting documentary, Butterfly Girl, she faintly buzzes with life: Her blond hair glows in the neon light of the bars and clubs where she sells her father’s band merch; her eyes sparkle as she flirts with customers, Bell’s cameras, and her many medical specialists.
Abbie was born with dystrophic epidermolysis bullosa, a genetic disorder that causes extreme skin fragility. As her father puts it, at Abbie’s birth, “the nurse wiped her leg down and all her skin went with it.” The doctors told them she would probably die.
That Abbie, nineteen at the time of filming, is so healthy and vibrant is a tribute to the strength of her will and her relationship with her parents. Because of her condition — even small bumps can cause painful blisters — she spent most of her childhood at home, swaddled in gauze.
Now a young, much healthier adult, she has tasted freedom on the road with her father — and she now has an appetite for independence. Still, her physical problems keep Abbie tethered to her parents. Bell shows us Abbie crying as she and her mother perform an excruciating change of her gastric feeding tube, a task whose awfulness doesn’t seem to lessen with repetition.
She’s cheerfully resigned to the indignities heaped on her by her own body; she may not want to get extra nutrition through a tube, but later she’ll pour chocolate milk down it. Throughout Butterfly Girl, Abbie jokes, rolls her eyes, and pushes herself to take chances despite the pain she always faces.
Directed by Cary Bell
Opens August 28