Take all the highs and lows of being a teenage girl—the thrill of flirting with a boy, the frustration of feeling awkward in your own body, the embarrassment of being in public with your parents. Now add a rare, incurable genetic disease that makes your skin incredibly fragile, fuses your fingers together, and requires you to undergo multiple surgeries and use a feeding tube to absorb adequate calories. That’s the life of Abigail Evans, a pretty, vivacious teenager afflicted with epidermolysis bullosa. When she was born, her father recounts, the nurse wiped her down and accidentally took off much of her skin in the process. Doctors told her parents she would likely be dead within six weeks. Now, at 18, she’s somewhat of a living miracle—but her life is far from easy.
First-time director Cary Bell takes an intimate and unflinching look at the Evans family’s life in Austin, from the mundane pleasures of making pancakes to the pain and fear of the multiple surgeries Abbie undergoes. Abbie’s parents are separated but are cordial with each other and take her to doctor’s appointments together; while their parenting styles and relationship to their daughter are very different, they’re united by their love and concern for her. She lives the life of a regular teen in many ways: She sneaks beer and chats up guys while on the job as the merchandise girl for her musician dad (a scene in which he dedicates his song “Butterfly Girl” to her at a concert seems almost too cinematically perfect to be real) and dreams of getting her own apartment and traveling the world. But the fragility of her condition (her beauty routine involves applying mascara and draining the large blisters that form regularly on her skin, and she undergoes regular procedures to open her esophagus enough for her to be able to swallow food) make her wish for a “normal” life seem nearly impossible.
While most kids her age are debating which college to attend, Abbie has to choose between going to school at all or opting for surgery to reconstruct one of her hands (the other has already healed) that will cause mountains of pain and require months of recovery time. Still, her irrepressible spirit shines through, especially as Bell follows her while she takes the important step of flying to California by herself to participate in a Stanford study on EB—and, of course, to go to the beach. “I don’t have an easy life whatsoever,” she says to the camera at one point. “But I’m never gonna give up.”
Butterfly Girl serves to educate people who may be unfamiliar with the condition Abbie suffers, but it’s also relatable on a simple human level. Though Abbie is affected by extraordinary circumstances, in the Evans’s story is the universal tale of a young person trying to discover herself and her place in the world, and of the parents who love her enough, despite their worry, to let her.
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