Chapter 13 - A Caregiver’s Perspective

Summary

This chapter chronicles one parent’s journey through discovering that her son had PWS and what that would mean for her family. This chapter describes the patient’s initial diagnosis and the health complications that followed. The writer allows readers a view into her own personal struggles – her fear, her pain, her unwavering devotion to and advocacy for her son’s well-being. The writer gives voice to what it means to be a mother to a child with PWS. She also discusses the impact the medical and behavioral manifestations of the diagnosis has had on her family as a whole. She refers to a “new normal” that defines how they live their lives through the context of the therapies, medical interventions, and behavioral struggles that come with PWS. The chapter helps establish the perspective of those caregivers this book hopes to serve.