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By Shawn Astin
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I entered the room at Shriner’s Children Hospital and saw my sweet friend, only 12 years old, recovering from spinal fusion therapy, her eyes full of light and her spirit bright. I held a cup of soda for her as she swallowed her medication. She had been through a lot. Only weeks before Skyler underwent brain surgery where part of her skull was cut in order to remove the cerebral tonsils. I didn’t know what Chiari malformation or syringomyelia were. I still know very little. But each and every day, Skyler Day fights this condition among other children and adults across the nation.
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The Chiari malformation is an abnormality in the lower part of the brain called the cerebellum in which the cerebellar tonsils herniate into the spinal canal. The degree to which the tonsils extend can vary tremendously. Syringomyelia, often referred to as SM, is a chronic disorder involving the spinal cord. The condition occurs when cerebrospinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx. (Information provided by http://www.asap.org)
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One of Skyler’s passions is acting. In her young career, Skyler has already won awards for her acting ability. As a filmmaker, I recently offered Skyler a role in my upcoming film project “For Benjamin,” the story of a boy who seeks the return of his idolized brother from the military by starting a video blog petitioning for peace and mending the dysfunctional relationship he has with his father that started at his birth. This is an inspirational film about hope and finding peace.
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Since the film was in the funding stages and Skyler, her family and I wanted to give back, we’ve started a fundraiser through the crowdfunding site Indiegogo. With every contribution made, 50 percent will help the funding of “For Benjamin” and 50 percent will be donated to the Chiari and Syringomyelia Foundation for the research and awareness of these little-known conditions.
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Please visit www.indiegogo.com and search for the project “For Benjamin, For Chiari” and help support the funding of this inspiring film and the research and awareness of Chiari malformation and syringomyelia. Presently, there is no known cure.
