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"I have found this project to be more than a filmic endeavor." hildren who have Canavan disease, a genetic neurological disorder that deteriorates the white matter (myelin) in the brain, have an average life expectancy of 3-10 years. Filmmaker and former Detroiter Stephenie Sasson is hoping to change that grim statistic with her docu- mentary As Daylight Breaks, featured in this year's Lenore Marwil Jewish Film Festival. The film focuses on the challenges of 8-year-old Jacob Sontag, who has Canavan Disease, and the inspiring relationship he has with his mother, Jordana, and his stepfather, Gareth Holovach. Sasson read about Jacob in 1999 in the New York Times Magazine. Impressed by the powerful bond between Jacob and his mother, Sasson approached the fami- Jordana Sontag holds 8 year old Jacob. ly about doing a documen- tary as part of her under- As Daylight Breaks has gained the sup- graduate thesis at New York University. port of Senator Hillary Rodham and "I knew right away it would make a Congresswoman Nita Lowey, who are great film," said Sasson, "and Jordana co-chairing an upcoming screening of agreed to put it into our hands." the film on Capitol Hill to try to gain Mrs. Sontag started "Jacob's Cure," a additional funding for research. non-profit foundation, to raise money Like Tay Sachs, Canavan is most for research on gene therapy and neural prevalent among Ashkenazi Jews. Both stem-cell transplantation. So far, Jacob parents must be carriers. Now that the and several other children have achieved gene has been identified, a simple blood dramatic results through the use of an test can determine whether parents have advanced gene therapy procedure. • the potential to pass on the disease. According to his mother, Jacob has Chaya Leah Tinman of Southfield is "miraculously" produced new myelin. all too familiar with the disease. Her son His weight and overall strength have Hershy, now 16, was diagnosed with it and increased, his eyesight has improved, shortly before his second birthday. he is now vocalizing to communicate. "The doctors said he wouldn't live to Sasson is the daughter of Monica be 2 years old, but he had been in the (Minowitz) and Henry Sasson of hospital for several weeks and we wanted Bloomfield Hills. She attended Detroit to bring him home," said Tinman, a Country Day School, UCLA and the social worker and school inclusion coor- School of the Art Institute of Chicago dinator for the Harris Children and before completing her studies at New Family Division of JARC. "The day he York University's Tisch School of the Arts. "I have always known that I wanted to came home, he smiled, and we knew we • had done the right thing." be a Filmmaker," said Sasson. As a child To the best of Tinman's knowledge, I would make similar drawings in little Hershy is the only person in Michigan white notebooks, changing the place- with Canavan disease. ments of the figures only slightly so that "It's been a long journey," said Tinman. when the book would flip, you would - -