An intimate portrait of what it’s like to be a teenage girl with a rare life-threatening disease, “Butterfly Girl” opts for a celebration of life over a fear of death to ultimately devastating effect. Although limited in scope, the feature documentary debut of TV news veteran Cary Bell benefits greatly from the infectious personality of its subject, Abigail Evans. The result is something along the lines of a particularly solid installment of MTV’s “True Life,” and indeed smallscreen play may be the modest yet moving pic’s best bet of finding an audience.
Bright, bubbly and beautiful, 18-year-old Evans could be the prototypical high-school queen bee, except for the fact she was born with epidermolysis bullosa (EB) — an incurable connective tissue disorder that leaves skin so fragile that blisters, wounds, infections and inflammations are a chronic way of life. Blisters in her esophagus require multiple surgeries a year and necessitate a gastrostomy tube inserted in her stomach to assist in delivering nutrients and medication when it’s too painful to swallow. Through it all, Abbie (as she prefers to be called) acts like any other teenager — sometimes moody, sometimes stubborn but eager for the opportunity to explore the world and find out what life has to offer.
Splitting her time between divorced but equally supportive parents in Austin, Abbie frequently hits the road with her musician father, John. She sells merch at his shows, and relishes the chance to socialize and hang out in bars and clubs. Her mother, Stacie, functions as an attentive caretaker, doing laundry and making sure her daughter is well fed. The family unit is the center of Abbie’s world — and, by extension, the center of the film — providing a sturdy foundation no matter what kind of day she might be having. They’ve been doing all this long before any filmmakers knocked on their doors, and can’t imagine anything else.
Conflict arises when Abbie begins taking steps to assert her independence, expressing a desire to move away and go to college (although she’s not thrilled about living in a dorm) and taking it upon herself to volunteer for a research study in Stanford, Calif. John and Stacie realize they need to allow Abbie to spread her wings — it’s everything they’ve always wanted for her — but the typical bittersweet feelings parents experience when it comes to letting go are only intensified by the bonds forged by Abbie’s disease.
With the aid of a pro tech package including Matt Godwin’s lustrous lensing, Bell doesn’t flinch from the queasy details of Abbie’s battle with EB. While squeamish viewers are sure to wince during routine medical visits or surgical discussions (at one point Abbie jokingly compares her wounds to those on “The Walking Dead”), there’s never a feeling of exploitation or shock value. Nor is there an overdose of mawkish sentimentality.
“Butterfly Girl” takes its cues from the Evans family, and although it would be easy for the film to become grim or despairing, that’s not how any of them choose to see their situation. Still, a few moments of doubt slip in. When discussing her surgeries, Abbie somewhat sarcastically remarks that success is “all about your positive attitude and whatnot.” And, in a solo interview, Stacie offers the particularly raw admission that she realizes, in all likelihood, that Abbie will pass away first. Life expectancy for the most severe forms of EB doesn’t extend much beyond 30.
Sadly, as revealed in a closing title card, Abbie passed away in her sleep at the age of 20, just a few months before the film’s SXSW Film Festival premiere. It’s a tragedy that retroactively transforms the entire project into a memorial in her honor.