Sophie was born with a rare genetic disorder, Prader-Willi syndrome (PWS), which affects roughly one in every 15,000 births.
Filmed over 35 years, THE LIFE YOU’RE GIVEN is a deeply personal documentary film that shares the challenges of a family raising a daughter with a rare and complex genetic disorder, Prader-Willi syndrome.
At its core, it is a story of determination and unconditional love, which speaks to the Prader-Willi syndrome community, the developmental disability community, and to any of us when we must shift our attention away from ourselves to care for another.
When our daughter was born, she spent the first two weeks of her life in the Neonatal Intensive Care Unit. Her doctors had no idea what was going on. A few months later, a renowned geneticist at a New York City hospital performed a muscle biopsy on her right thigh. During our next appointment, he told us that Sophie had Spinal Muscular Atrophy, a fatal condition that would lead to her death before the end of her first year. When we told him we'd like a second opinion, he emphatically stated that he was the second opinion.
I had been making films since I was in my twenties, so I started filming Sophie to ensure that her brother, Sam, would have a record of her brief life. When she was eight months old, rather than becoming weaker, Sophie sat up and rolled over, which the doctor had told us would be impossible. When we consulted another geneticist, she said, "I don't know what it is, but it is definitely not Spinal Muscular Atrophy, and I cannot provide a diagnosis for her at this time.”
One day when she was eighteen months old, considered to be the outer limit of normal for children to begin walking, Sophie stood up and walked. I continued filming her. A year and a half later, a geneticist at the University of New Mexico Hospital re-examined her, sending a blood sample to Baylor University Medical Center for methylation testing. When it came back positive, she confirmed that Sophie had Prader-Willi syndrome (PWS). It was at that moment, as I listened to the doctor talk about PWS, that I decided to make a documentary film about our family’s experience raising Sophie: I needed to make sense of it for myself, and I also wanted to contribute to those parents in the future receiving this diagnosis to have a fuller understanding of their child's needs and be better prepared for their child's future.
— Jay Coggeshall
