Dear Megan: Letters on Life, Love And Fragile X (Capital Cares (Paperback))
Editorial Reviews
Review
"The book allows us to take an unfiltered peek into the souls of these two amazing women as they bushwhack the trail and make it smoother for others who will follow. They do not skirt the tough issues, addressing topics such as the desire to have more children, in vitro fertilization and abortion, home versus residential treatment, quality of life for both their children and themselves, effects on siblings and other family members, public embarrassment, and a host of other thorny issues. Hopefully, scientific research will one day soon eradicate this disease and the need for this book will cease. But for researchers, this book reminds us of the urgency of our work. For families, we find guidance and companionship in the journey. ... thanks to Mary Beth and Megan, who are paving the path with paper and pen."
--From the Foreword by Pam and Don Bailey
Book Description
Fragile X syndrome (the most common known inherited cause of mental retardation and autism) affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups. When Mary Beth Busby's sons, Robert and Jack, were born in 1964 and 1965, Fragile X had not even been identified as a genetic abnormality. By the time Megan Massey's sons Jack and Jacob were born in 1989 and 1991, a few researchers had identified it, but few pediatricians knew it existed. DEAR MEGAN takes the form of intimate letters over the years between two mothers of different generations, each with two Fragile X sons. In its pages they reveal what it is really like for families to have and care for abnormal and disabled children. The two mothers met as active board members of FRAXA, the Fragile X Research Foundation, which they both joined to help fight for research to find a cure and help their sons. Through their letters back and forth to each other, they take us on their life journey into motherhood, marriage, families, schools, health systems, politics, all while caring for their four beloved sons and preparing for their futures. DEAR MEGAN is an inspiring story of courage and endurance, but also about the possibilities of life.
Dear Megan: Letters on Life, Love And Fragile X (Capital Cares (Paperback))
Dear Megan: Letters on Life, Love And Fragile X (Capital Cares (Paperback)),Mary Beth Busby,Megan Massey,Capital Books (VA),1933102233,Child Care/Parenting,Collected Correspondence,Diseases - Genetic,Diseases - Nervous System (incl. Brain),Family & Relationships,Fragile X Syndrome,Letters,Mental Disorders,Miscellanea,Parent And Child,Parenting - General,Pediatrics,Personal Narratives
Book Contents:
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