The documentary ‘Butterfly Girl’ (2014) tells the story of Abigail Evans, a 18 year old from Texas with a rare skin disorder, epidermolysis bullosa. Abbie spends her life having to be cautious and having to endure painful medical procedures. She works at her father’s honky tonk concerts selling concert t-shirts. She might be struggling, yet she remains strong and seeks more. Abbie makes the most out of her life, and explores her world – photographing California cliffs, eating out in a diner, having a great time at bars in Austin where her father plays – with an inspiring passion and enthusiasm. The documentary portrays the mixed emotions of desire for more as well as fears, fears also from Abbie’s parents, who want to protect her, but also let her live free.
Epidermolysis bullosa “is a very rare and painful genetic connective tissue disorder that affects 1 child out of every 20,000 live births in the United States (that means about 200 children a year are born with EB). Because their skin is so fragile, they are often known as ‘Butterfly Children.’ EB afflicts both genders and all racial and ethnic backgrounds equally. EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. More severe forms of EB result in disfigurement, disability, and early death, usually before the age of 30. In fact, some forms of EB are lethal in the first few months of life. As of today, there is no cure or treatment. Daily wound care, pain management, and protective bandaging are the only options available.” Source: http://debra.org/whatiseb
Check out the documentary’s site: https://butterflygirlmovie.com