The Alamo Drafthouse on West Anderson was packed on a drizzly Sunday night. The lobby felt like a homecoming. Local Austin musicians chatted amongst pints of beer. Hands were shaken. Hugs were constant and everywhere.
Everyone was there to celebrate the life and legacy of Abigail Evans, a local Austin teenager whose battle with a horrific skin disorder is chronicled in Butterfly Girl. Full of real people and real moments, the documentary chronicles a two year period of Abbie’s battle with EB. Before the screening, I knew very little about Abbie and her disease. By the time it was all over, I felt like a member of the family.
Living With EB
Abbie was born with EB (Epidermolysis Bullosa), a genetic skin disorder that affects one in every 20,000 live births. Children stricken with the disorder have extraordinarily sensitive skin that can blister or tear at a moment’s notice. Kids who suffer from EB are known as Butterfly Children because their skin is as fragile as a butterfly’s wings.
In Butterfly Girl, we get a firsthand view into living with EB through the eyes of Abbie and her family. While she seems like a normal girl on the outside, her condition is dire. Forced to stay one step ahead of the degenerative disease, the film documents her day to day struggles as well as her many surgeries. The effect is stunningly visceral. No punches are pulled as she changes out feeding tubes and attempts to rebuild her hands through intensive surgeries.
A Stunning Spirit
But it’s not all pain and medical science. The beauty of the film comes from Abbie’s extraordinary outlook on life. Every scene of heartbreak is balanced with a moment of joy. Whether she’s hanging out with her dog, selling merch at her dad’s shows or simply taking in all that’s great about Austin, Abbie takes giant handfuls of life.
Even her struggles are met with smiles. The most telling scene is when she has to change out her feeding tube with the help of her mom, Stacie Bolyard. Despite what looks like unbearable pain, Abbie pulls through like a rock star. Every challenge is met with determination or a sideways joke.
All of this is wrapped in a desire for independence. Like any 18 year old, Abbie wants nothing more than to break free and discover the world on her own. This culminates in a trip to Stanford where she agrees to be an EB test subject. Even on vacation, she’s giving back.
A Solid Support System
Abbie’s awesome wasn’t an accident. Her parents, local Austin musician John Evans and Stacie Bolyand, should take full credit in raising an exceptional girl. Butterfly Girl gives John and Stacie equal time in exploring their relationship. They’re a great team: John gives Abbie a sense of freedom and a “can do” attitude as she travels around with him and his band while Stacie provides tenderness and care at home.
The movie also sheds light on the strain of being a caregiver. While she never wavers from her duties, the stress of Abbie’s condition is clear on Stacie’s face. She even admits to “needing” Abbie as a measure of her own self-worth. It was refreshing to see this level of honesty.
A Lasting Legacy
When the Alamo Drafthouse screening was over, a receiving line of well wishes snaked around the theater. Everyone had a hug for Abbie’s parents. John and Stacie made sure to personally thank everyone for coming. John even spent a few minutes with me outside. When I asked him how it felt to see Abbie over and over again on the big screen, he answered, “Every viewing opens up another wound I thought was closed. But that’s a blessing.”
Weeks later, I was at a company holiday party. Conversation about Butterfly Girl sprang up. The city of Austin had named December 14th “Butterfly Girl Day” and Abbie was in the news. Out of nowhere, our hostess Nicole piped up. It turns out she babysat for Abbie back in the day and, with no prompting, spent five teary minutes talking about how wonderful she was. She wasn’t looking for attention or trying to get in on the conversation. She had to share her story. Had to let us know how deeply Abbie affected her.
That’s what learning about Abbie does. It forces you to spread the word. Intimate and personal, Butterfly Girl doesn’t just tell the story of Abbie’s irrepressible spirit. It’s an inspiring blueprint for how we should all be living day to day. A brave and touching film about a courageous and exceptional young lady.
For information on screenings, Abbie and EB, go to www.butterflymovie.com.
UPDATE: The filmmakers are currently working on releasing Butterfly Girl in a limited theatrical release in February 2015. The film will also be available on iTunes in April. For up to the minute information on screenings, go to the movie’s Facebook page.
@BillTuckerTSP wants to know:
How has the story of Abbie Evans affected you?