Filter By Subjects
Community-Based Participatory Research Disabled Children Genetic disorders in children Patients Family relationships Niemann-Pick Disease, Type C therapy Niemann-Pick diseases Treatment Parent-Child Relations Parents Parents of children with disabilities Rare diseases Patients Rare Diseases therapyFilter By Subjects
Community-Based Participatory Research Disabled Children Genetic disorders in children Patients Family relationships Niemann-Pick Disease, Type C therapy Niemann-Pick diseases Treatment Parent-Child Relations Parents Parents of children with disabilities Rare diseases Patients Rare Diseases therapyStage, Zoje
Summary: Afflicted with a chronic debilitating condition, Suzette Jensen knew having children would wreak havoc on her already fragile body. Nevertheless, she brought Hanna into the world, pleased and proud to start a family with her husband Alex. Estranged from her own mother, Suzette is determined to raise her beautiful daughter with the love, care, and support she was denied. But Hanna proves to be a...
Format: text
Publisher / Publication Date: St. Martin's Press 2018
Copies Available at Woodmere
2 available in Adult Fiction, Call number: FIC STAMarcus, Amy Dockser
Summary: "Pulitzer Prize-winning reporter Amy Dockser Marcus shows what happened when a group of parents joined forces with doctors and researchers to try to save children's lives. Parents whose children had been diagnosed with the rare and fatal genetic condition Niemann-Pick Type C disease recognized there would never be a treatment in time to save their children if things stayed the same, so the...
Format: text
Publisher / Publication Date: Riverhead Books 2023