Grace

Published: December 12th, 2011

Category: CMN Ambassador Stories, Patient Stories

Grace

Grace

At birth, Grace did not cry, wake to feed, or suck her bottle properly.  Physicians described her as “floppy” due to her low muscle tone and identified her with “failure to thrive.”  Grace was diagnosed with Prader-Willi syndrome (PWS), a complex genetic disorder that affects appetite, growth, learning and behavior.  Children with PWS eventually develop an insatiable appetite, which coupled with the slow metabolism, low muscle tone and inability to exercise can lead to severe obesity.  Grace’s family decided to bring her to Shands Children’s Hospital at UF because they found some of the leading physicians in the world studying PWS at Shands.  Grace’s physicians hope that these studies will lead to better interventions and ultimately help find a cure for Prader-Willi syndrome.