I Am Not a Syndrome - My Name is Simon

ISBN-13: 9781937376161 / Angielski / Miękka / 2012 / 224 str.

Sheryl Crosier;Andy Knef

Opis

The medicalcommunity said that Simon was "incompatible with life" but the Crosier family refused to accept that diagnosis. "I Am Not a Syndrome - MyName is Simon" is the moving and gripping story of a baby diagnosed withTrisomy 18, a genetic disorder in which a person has a third copy of materialfrom chromosome 18. Produced byindependent book publisher All Star Press, "I Am Not a Syndrome - My Nameis Simon" details the struggle of Sheryl's son Simon from the early stagesof pregnancy to his life here on earth. During thisdifficult time, Sheryl confronts a sometimes difficult andindifferent medical system to advocate on Simon's behalf. This is a trulyinspirational story with a strong pro-life message. "I longed totell Simon's story of hope, faith, love and the peace which God grantedme," explained Sheryl. "I write this book to demonstrate thatour children are not a label and are not defects They have a name andidentity. They are children of God." Born on September7, 2010, in St. Louis, Missouri, Simon Dominic Crosier was diagnosed withTrisomy 18 and lived for three memorable months. Despite his disabilities, Simon had a huge impact on all who came into contact with him. The book isabout Simon's short and meaningful life, his family and his wonderfulcaregivers. "I Am Not a Syndrome - My Name is Simon" documents thefamily's battle to advocate for their precious son against an oftentimesindifferent and callous medical community. "Strugglingwith the fragility of Simon's life was one thing. However, struggling with thepopular pragmatic culture that measures human life in terms of dollars ratherthan dignity, is quite another. Yet, all along the way, again and again, Sheryland Scott discovered and were made disciples of 'Life.' This story celebratesboth the pain and the joy of love " stated Rev. Robert J. Hermann, BishopEmeritus in Residence, St. Louis Archdiocese of St. Louis. The Crosierfamily had to overcome challenges put in their way by medical professionals andeven extended family members who never valued Simon's fragile existence the waythey did. Author Sheryl Crosier's hope is that this story will help motivatehealth-care professionals and anyone else that reads this account. The lives ofchildren, regardless of their diagnosis, possess inherent dignity and value, and they deserve the best care our advanced country has to offer. "Numeroustimes I would say to medical professionals," explained Sheryl. "That wewant Simon, special needs and all. But then we would hear callus responses suchas 'incompatible with life' and 'failure to thrive' and 'not for Simon.'" "I Am Not aSyndrome - My Name is Simon" is now available from publisher All StarPress - Books that Change Lives. A portionof proceeds from every sale of this book will go to SOFT, Support Organizationfor Trisomy 18, 13 and Related Disorders. TESTIMONIALS "Be preparedfor smiles, laughter and tears. This is a book well written by an amazingtrisomy Mom "
AlexHauber
Executivedirector Trisomy Advocacy Group
"SherylCrosier's memoir, I'm Not A Syndrome - My Name is Simon, of her journey duringher pregnancy and her infant son Simon's short but important life, is a storyof the heart and spirit. It is also a story of the head that explores thecapabilities and constraints of modern medicine and policy, parental rights andethical decision making."
Pamela Healey, Ph.D. mother to Conor, Trisomy 18.
"This bookis a love story shared by a family who believes that every life has purpose andworth."
Ann Barnes, RNand mother of Megan (1985-2004) born with Trisomy 18.
Co-author ofCare of the Infant and Child with Trisomy 18 or 13 (2011)