Podcast: Sarah - a genetic diagnosis and palliative care
Sarah is the mother of Emerson. After 7 sleep-deprived but blissful months, Sarah and her husband Steve learned that Emerson had Gaucher Type 2. Gaucher Type 2 is always fatal in early childhood. Sarah shares here the vital role that Courageous Parents Network AND pediatric palliative care played in the months that followed the diagnosis and then Emerson’s death shortly after her first birthday, in June 2016. This recording is taken from a talk that Sarah gave in January 2017 at Pediatric Grand Rounds at the University of Vermont Children’s Hospital, where Emerson was loved and cared for and where she died.