The English translation for the Spanish words 'Piel de Cristal' is The Crystal Skin. This is a name for a delicate and fragile human skin condition called Dystrophic Epidermolysis Bullosa (DEB). It is also known as 'butterfly skin' because the skin becomes as delicate as a butterfly wing.
A short film accepted into the Slamdance Film Festival 2016 line-up from documentary filmmakers Michaela O'Brien and Melissa Langer tells the story of eleven year old Maria Alejandra who suffers from this rare skin disorder. O'Brien (a director, producer and cinematographer) and Langer (a producer, editor and sound engineer) collaborate their talents to give insight into a-day-in-the-life of a little girl who has butterfly skin. Emotionally and visually gripping their film In Crystal Skin leaves an unforgettable impression.
Maria is eleven years old and in the 5th grade when the filmmakers meet Maria and her family who live in Bogota, Columbia. The filmmakers are drawn to their story. Maria is an exceptional little girl fighting every day to have a normal life. Unfortunately, her crystal skin stands in the way of anything but normal. Maria's beauty is not initially seen by her outward appearance but it's her inner beauty that captivates ones heart. Maria is transparent. Cleaver. Witty. Intelligent. Maria is relatable. But, suffers physically.
Maria can play outside but must avoid intense sun. Difficult for a child her age and in the climate they live. She can't participate in any activities with contact. Even at her young age, Maria has trouble standing on her feet or walking for extended periods of time.
O'Brien and Langer take their cameras and shadow Maria for one whole day. O'Brien says, "Maria's grit and optimism captured their interest." Maria, her family and their friends show the film audience what it is like to live with a debilitating skin disorder. One that keeps Maria from maintaining a normal childhood. The hours needed for daily cleaning and bandaging. The struggle between mother and daughter when Maria refuses to attend school because it's too much effort. Maria shows us the impact her school, her best friend, her home, and her family have on her life. Maria needs their encouragement day after day to numb the pain she endures. Maria needs their strength so she doesn't become lazy. Maria needs their fortitude to not give up living.
The two filmmakers work hard to express their concern for those suffering from one of the worlds 7,000 rare diseases. They conclude, "Our hope is that the personal experiences captured in In Crystal Skin will spur much needed dialogue about managing life with a rare disease."
Filmmaking is a way to bear witness to the lives of others - to show, and not just tell their stories." says Langer of why Maria's story is so incredible to share. O'Brien adds, "Filmmaking is an exercise in relating to humanity by putting yourself in someone else's shoes." She continues, "In Crystal Skin sheds light on life experiences rarely heard of, but which are universally relatable."