“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.
“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.”
The e-book version of “I Am Not a Syndrome – My Name is Simon” is now available from All Star Press – Books that Change Lives – this week. Click the “buy now” button below to download this book instantly in PDF format.
A portion of proceeds from every sale of this book will go to SOFT, Support Organization for Trisomy 18, 13 and Related Disorders.