Loving Leanne: Living with Rubinstein-Taybi Syndrome

ISBN-13: 9781481119474 / Angielski / Miękka / 2012 / 120 str.

Debbie Roome; Dorothy Ade

Opis

Leanne will never marry, never have children and will never live on her own. She will never drive a car or catch a bus unaided. She will never cook a meal, wash her clothes or iron a shirt. She cannot because she was born with a condition called Rubinstein-Taybi Syndrome (RTS). This rare genetic disorder causes mental and physical disabilities and she will always be dependent on others. Leanne's life story is told by her mother and sister and they examine the highs and lows of caring for a mentally and physically disabled person. The book is divided into six chapters which look at Leanne's early days, how Rubinstein-Taybi Syndrome affects her, her schooling, her extensive medical history, her spiritual and social life, and the ongoing process of caring for her daily. It also includes a list of RTS characteristics and problems and explains how these play out in daily life. Covering the first 45 years of Leanne's life, this book is a story of hope and triumph with a healthy dose of reality mixed into it. An ideal read for anyone who is caregiver to a disabled person or for parents who have a child with RTS.