Pat Stein, an 18 year old high school star athlete wakes up one morning able to move nothing but his eyes.
Following an unexpected stroke that left him in the state of Locked-In Syndrome (LIS), a rare condition that leaves the entire body paralyzed, Patrick Stein is forced to reexamine his place in the world and fight for his life. The Stein family is determined to do everything they can to create a quality life for their child and his future. However, in doing so, they might destroy their own. It’s a film about a young man persevering against monumental odds, not only to stay alive but also to thrive in a body that he no longer physically controls. Amid the turmoil, Patrick’s family has the additional struggle of fending off enormous financial challenges.
Patrick Stein was in the prime of his life; he was a student athlete and captain of his water polo and swim teams and willing to try anything to keep his teammates motivated by using his unique combination of humor and fierce competitiveness. He often pumped up the team, urging them to "crush it" before a competition. The day after attending his senior year homecoming dance, the doctor diagnosed Patrick as having a giant aneurysm in the area of his brain stem. Four days later, Patrick underwent extensive surgery to treat the aneurysm. Unfortunately during the procedure, the aneurysm ruptured and he suffered a massive stroke, causing the loss of nearly all his motor skills. He was further diagnosed with the condition of Locked-in Syndrome (LIS), medically defined as having lost control of all purposeful movement other than the eyes/eyelids. Because people who suffer from this disease cannot speak or swallow, they require constant nursing care in order to remain at home.
Popular literature refers to this syndrome as being "buried alive".
Patrick’s mind is 100% intact. He and others who suffer from LIS cannot call out for help. They cannot move a single muscle. Cannot kiss a loved one or taste favorite foods. But they can smile, silently laugh, and understand. Can feel pain, happiness, frustration and anger. They can make some people laugh and others cry. They can dream, concentrate, learn. And because he has a great mind, Patrick is currently taking college courses even though communication is cumbersome for him. He “speaks” by blinking letter queues of the alphabet.
The film will follow Patrick’s daily routine as he interacts with family, friends, nurses, teachers and therapists. The film will expose the Stein’s battles with the health care system and insurance companies that present a constant threat to their financial stability. The film will also portray a typical Midwest family of five whose world changed in the blink of an eye.
Present day is shot in the cinema verite style. Using a 100mm macro lens, the film aims to depict the internal world from Patrick’s point of view. Through his experiences and writings, we hope to explore the difference between external silence and internal noise. Cinema verite footage will be mixed with archival, iphone recordings and interview footage.
We will hear from members of Patrick’s medical team, family, friends, former coaches, as well as Patrick himself. We will experience the safe home environment which has been created exclusively for Patrick and allows him to mentally thrive. We will see the Stein’s intimate family life juxtaposed with their battle against the court system.
We will see Patrick as a 20-year-old young man who struggles to lead a full life and who realizes how important it is to strive for an unparalleled future with dreams set incredibly high.
The Steins are pioneers for their son’s cause and other Locked-in Syndrome sufferers. They fight to defy convention by seeking cutting-edge practices in research and technology in hopes of creating a new and exciting path to an improved quality of life and complete recovery for their son. They also fight with the state of Illinois and the behemoth insurance companies to keep him alive and at home.
Catastrophe can cut through any family.
This family’s encounter with the broken healthcare system is something everyone will experience at some level. Their story could at any moment become our own.
BUDGET REQUEST BREAKDOWN
We are asking for $14,275 to be used for travel costs, website domains, hard drives, meals, color correction, music, and archival rights.
The full budget for the film is $37,000. We have already covered pre-production, cameras, lighting, sound equipment, film crew costs, editing studio, etc.
Risks and challenges
With film production comes a series of minute-to-minute, day-to-day challenges that as a crew we must overcome to complete the film in the best way possible. Since this is a documentary and we are dealing with real life, nothing is predictable. One of our biggest challenges is being based in New York. However, we are in frequent contact with the family to remain updated on their status with any issues pertinent to this story. We are committed to flying to Chicago to film with limited preparation. Above all, we remain dedicated to the final product and are committed to taking the measures needed to attain the success this project warrants.Learn about accountability on Kickstarter
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