Clinical Trial Aims to Improve Daily Life for People with Prader-Willi Syndrome and Their Families

(BPT) - For Kevin and Karin Sweeney, the distress was immediate. Moments after the birth of their daughter, Klara, doctors and nurses gathered in the delivery room in a quiet cluster. Their whispers were a vivid and unnerving sign that something was troubling them about the baby. Karin sensed it, too. Klara wasn't crying and would not latch on to nurse. She needed a feeding tube and further evaluation in the neonatal intensive care unit.

Soon after, genetic testing revealed that she had Prader-Willi syndrome (PWS), a rare disorder characterized by chronic hunger, growth hormone deficiency, and behavior changes.