Abigail Evans looks a bit like Paris Hilton with her shiny blond hair and knowing smile.
At almost 19 she spends nights working the merchandise table at places like Austin’s Hole in the Wall as her singer/songwriter father John tours Texas. During the day she’s fighting epidermolysis bullosa, a rare disease that causes her skin to blister on contact and raises the possibility of her esophagus closing tight without regular surgery. She was born with it and given just a week to live, but Abbie is fiercely alive, we learn in Cary Bell’s documentary Butterfly Girl.
The documentary leans more toward the music in its first half, but gets truly gripping nearer its close as Abbie’s teenage restlessness compounded by a lifetime of shuttling between her father’s “tough love” and her mother’s nurturing protection sends her in search of her own adult identity. A side effect of the disease – which outwardly affects Abbie most on her hands, feet, and elbows – is a melding of her fingers into a web. She must decide whether to undergo an extremely painful operation to regain use of them. Bell says she didn’t want to make a disease movie, but instead a human portrait of survival. She succeeds.
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