“I Am Not a Syndrome – My Name is Simon” is the gripping and moving story of a baby diagnosed with Trisomy 18, a genetic disorder in which a person has a third copy of material from chromosome 18. This book by Trisomy mom Sheryl Crosier details the struggle of her son Simon from the early stages of pregnancy to his life here on earth for 88 1/2 days. During this same time, Sheryl confronts a sometimes difficult and indifferent medical system to advocate on Simon’s behalf. It is a truly inspirational and moving story. Released as an e-book in August, “I Am Not a Syndrome – My Name is Simon” is now available in print from publisher All Star Press.
“I longed to tell Simon’s story of hope, faith, love and the peace which God granted me,” explained Sheryl. “I want to help one understand the battles a family goes through and what a blessing life is no matter how short. It is evident that Trisomy 18 is a diagnosis, not a prognosis and a family’s love does not count chromosomes. Ultimately, God is our Maker and he knows our number of days. I write this book to demonstrate that our children are not a label and are not defects! They have a name and identity. They are children of God.”
Simon Dominic Crosier was born on September 7, 2010, in St. Louis, Missouri. He was diagnosed with Trisomy 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 is about Simon’s short and meaningful life, his family and his wonderful caregivers. But more importantly, this story documents the family’s battle to advocate for their precious son against an oftentimes callus medical community.
The Crosier family had to overcome challenges put in their way by the medical industry and even extended family members who never valued Simon’s fragile existence the way they did. Author Sheryl Crosier’s hope is that this story will help motivate health-care professionals and anyone else that reads this account. The lives of children, regardless of their diagnosis, possess inherent dignity and value, and they deserve the best care our advanced country has to offer.
“There is so much more to this story than reading of a little boy’s journey,” stated Pat Jonas, President and Co-founder of the Australian Rare Chromo Awareness Network (ARCAN). “It is learning about the legacy for which he was here. Simon will live on in the hearts of many and I feel he truly has a place in mine. I don’t see Simon’s life as a tragedy but as a beautiful blessing. God knew what he was doing when he helped to choose Simon’s parents, for they are the ones who will bring his mission to its full potential.”
“I Am Not a Syndrome – My Name is Simon” is now available in print from All Star Press – Books that Change Lives – this week. Click the “easy checkout with PayPal” button below to order the new PRINT version of this book. Book orders will ship the second week of November.
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A portion of proceeds from every sale of this book will go to SOFT, Support Organization for Trisomy 18, 13 and Related Disorders.
TESTIMONIALS
“Be prepared for smiles, laughter and tears. This is a book well written by an amazing trisomy Mom!”
Alex Hauber
Executive director Trisomy Advocacy Group
“Sheryl Crosier’s memoir, I’m Not A Syndrome – My Name is Simon, of her journey during her pregnancy and her infant son Simon’s short but important life, is a story of the heart and spirit. It is also a story of the head that explores the capabilities and constraints of modern medicine and policy, parental rights and ethical decision making.”
Pamela Healey, Ph.D. mother to Conor, Trisomy 18.
“This book is a love story shared by a family who believes that every life has purpose and worth.”
Ann Barnes, RN and mother of Megan (1985-2004) born with Trisomy 18. Co-author of Care of the Infant and Child with Trisomy 18 or 13 (2011)
“This is the heroic and gripping story of Sheryl and Scott Crosier as they struggle through the 88½ days of life given their son, Simon, born with Trisomy 18, a rare chromosomal abnormality.
Struggling with the fragility of Simon’s life was one thing. However, struggling with the popular pragmatic culture that measures human life in terms of dollars rather than dignity, is quite another. Yet, all along the way, again and again, Sheryl and Scott discovered and were made disciples of Life. This story celebrates both the pain and the joy of love!”
Most Reverend Robert J. Hermann, Bishop Emeritus in Residence, St. Louis Archdiocese of St. Louis
“Your book is so wonderful Simon! You will help so many people, especially those who are gifted with children like you.”
Tammy R Cowan
Imaging Miracles, Springfield Mo
“This book provides important insight and will allow providers to better understand parents who have children with Trisomy 13 and 18.”
Barbara Farlow, BEngSci MBA, co-author of The Experience of Parents of Children with Trisomy 13 and 18 in Social Networks
“I’m Not a Syndrome — My Name Is Simon is an amazing combination of raw honesty, courage, determination, devotion and a whole lot of love.”
Tanya Leckie
Gold Coast, Australia
(Mum to Cooper Trisomy 13 Mosaic)
