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Memoir The Light of One Star is a record of the online journal that Anne kept from 2003--a year before her first child--seven-year-old Sam--died of mitochondrial disease until December 2007, just a few weeks after her second child--fifteen year old Zachary--died of this same disease. It is above all else, the chronicle of a mother’s fierce love for her children, but it is also a medical story--records of lab results, worries about specific drug effects, decisions about surgeries that the boys underwent. More importantly, it is about what happens when doctors include parents in the decision making, about the importance of a doctor admitting “I don’t know,” about residents who take time to play Yugio with a child, about a hospital security guard who files a missing person report for a stuffed animal. Mostly, despite the devastation wrecked by mitochondrial disease on her children, her family, on her--Anne’s story, like her boys’ lives--is filled with refulgent moments, shimmering with gratitude and humor and yes, even joy.
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Anne Fischer Juhlmann is the mother of four children, two of whom--Sam and Zachary--died of Mitochondrial Disease, a progressive, incurable illness that slowly destroys the body’s organs and systems. Sam was only seven when he died in March 2005; two years later, at age fifteen, Zachary died. During her sons’ brief lives, Anne, a pediatric nurse by training, advocated and fought relentlessly so that her sons could live full lives that were as joy-filled and ordinary as possible. Anne worked as a Family Program Coordinator as well as a Pediatric Case Manager in the Family Resource Center at Children’s Hospital of Wisconsin, teaching other parents how to advocate for their children with special needs and disabilities. Based on her unique perspective as a health educator who lived daily with the realities of mothering two terminally ill children, Anne founded at Children’s a unique education program for the hospital’s residents. TEAM (Together Everyone Achieves More) training included course work that Anne created, along with home visits, for Anne believed passionately that doctors must see children with chronic and debilitating illnesses in their own surroundings --not only in a hospital bed--in order to fully appreciate the non-medical challenges that also impacted--enormously--the child’s well-being. The program, initially a requirement for third-year residents, was soon required of second-year residents as well. For her efforts, Anne received the Pediatric House Staff Outstanding Educator Award in both 2007 and 2008. Just a month after Sam’s death, Anne was the keynote speaker at the Wisconsin Make-A-Wish Foundation’s annual banquet, sharing with others her hard-earned and heartbreaking wisdom. She held numerous fundraisers for Make-a-Wish, gave presentations at the United Mitochondrial Disease Foundation’s Annual Conferences, and was more than anything, a passionate advocate for the Blood Bank of Wisconsin, often writing in the online journal of the anonymous donors who “give so that my child may live.” Still, as she wrote in the journal, being a mother to her two brave sons and her talented and generous daughters was her most important role.
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Book Description CreateSpace Independent Publishing Platform, 2015. Condition: New. book. Seller Inventory # M1522727019