Life is Not Defined by a Diagnosis

by Sheryl Crosier, author of I Am Not a Syndrome-My Name is Simon

We’ve all heard of the struggles and hardships of those who became quadriplegics as the result of tragic accidents; or, the successful veteran who became a statistic when he lost his battle to cancer.  But, withholding nutrition and medical care is something that only happens in Chinese orphanages, not in The United States of America (where ALL have the inalienable right to life)…or does it?

My name is Sheryl Crosier, and I witnessed the struggles of my quadriplegic brother, David; and I recall my Marine veteran and successful engineer father feeling like a statistic when his oncologist offered no hope; and I adopted a severely malnourished 4-year-old girl with special needs from an orphanage in China.  But, the most devastating experience of all was the medical discrimination and denial of care experienced by my infant son, Simon, during his 3 months of life, all spent in a United States hospital.

My husband Scott and I have been married for 21 years, and our sons Samuel and Sean were born in 2003 and 2004.  Following the devastation of six miscarriages and genetic testing that revealed a predisposition to miscarry girls, we gave birth to our son Simon, in September 2010.  On his third day of life, Simon was diagnosed with Trisomy 18 (aka Edwards syndrome), and our lives revolved around him and his hospital room.  Family and friends spent many hours cuddling Simon and interacting with him; and, I diligently pumped breast milk to be fed to him through a tube in his nose, because his bilateral cleft lip made it difficult for him to nurse normally.

Boys with SimonAs Simon neared three months of age, we began the process of preparing for surgery to repair his heart.  However, just days before the scheduled pre-surgery consultation, tragedy struck!  On December 3rd, our son’s oxygen levels dropped and we pleaded with medical staff to intervene.  But, to our shock and dismay, no “code blue” resuscitation was engaged, while we were calmly informed that this was the end and nothing could be done. So at 10:45 am, we watched our sweet baby Simon take his last breath, inside a hospital surrounded by unengaged medical experts, whom we had employed to save our son!

It wasn’t until a nurse compassionately informed us that their hands were tied and encouraged us to closely examine Simon’s medical records, that we learned the gut-wrenching truth!  Unbeknownst to us, a doctor had placed a Do Not Resuscitate (DNR) Order on Simon. He; ordered only comfort feeds (which is the least amount of food to sustain life); and , prescribed a medication that expedited his death.  But, the most shocking revelation of all was that ours is not an isolated incident.

However, out of the ashes of our grief we found the joy of adopting our daughter Sabella, from an orphanage in China.  When I was barely pregnant with Simon, God was already preparing for us the daughter we thought we’d never have, as He rescued infant Sabella from the winter elements and placed her in a Chinese orphanage, where she was kept alive with minimal nutrition.  When Sabella joined our family as a 4-year-old, she weighed 23 pounds, and her first meal lasted an hour and a half.  It broke our hearts to imagine the level of deprivation she had experienced in her young life.  Now, Sabella is a happy and thriving 13-year-old, who exemplifies God’s amazing power of restoration!

While Simon (whose name means “to be heard”) taught us the value of unconditional love, Sabella (whose name means “to be consecrated / made holy”) continues to teach us to enjoy each moment.  Consequently, it has become our passion to advocate for the medically vulnerable and adoption of children with special needs.  Thus, the vision of our non-profit organizations is to be a nationwide network of families, guardians, and professionals that advocate for the core missions of Simon’s Law and Simon’s Kids.

So, would any of you want a third party determining the value of your child’s life?  Should it be legal to place a Do Not Resuscitate (DNR) Order on a child; or, withhold medical procedures, medication, food, or water, in an effort to hasten death, without written parental knowledge or consent?

Well, Simon’s Law says “NO!”  And, our mission is to create national awareness and protection for medically endangered pediatric dependents with life- threatening diagnosis through education, accountability, parental rights legislation, and Patients’ Bill of Rights.  Not only have we seen the passage of Simon’s Law legislation in 9 states (Kansas, South Dakota, Arizona, Missouri, Idaho, Arkansas, Iowa, Georgia, and Alabama), but we are also pleased to announce that the Simon Crosier Act will soon be reintroduced in Congress by Congressman Jake LaTurner.

Additionally, the mission of Simon’s Kids is to seek and foster fair and equal access to life saving medical treatment for pediatric dependents with life threatening diagnosis by equipping and empowering parents/legal guardians, through education, advocacy, resources, and national awareness.  Such information and resources include our SimonsLaw.org website and Simon’s Law / Simon’s Kid’s Community Facebook page.  Simon’s complete story is recorded in the books titled I Am Not a Syndrome-My Name is Simon and Hello My Name is Simon, as well as featured in the 2014 award winning documentary on medical discrimination, titled Labeled.

Therefore, I urge you to help us achieve our mission and make your state a Simon state, where NO child is denied parental requested life sustaining treatment for ANY reason!  Because, you never know when an injury or illness will put your own child or grandchild in the same medically vulnerable position as those with birth defects or genetic abnormalities, and you will discover that the medical community does not see his/her value the way you do.


Read Simon’s Story!

Sheryl Crosier was inspired to write the story of her son in I Am Not a Syndrome – My Name is Simon, published by All Star Press.  Order today direct from the publisher or on Amazon in print or Kindle formats.

I Am Not a Syndome

Books That Change Lives on Sale During Rare Disease Month

February 2021 is Rare Disease Month

Two Amazing Books on Sale 

Diagnosis_Rare_DiseaseOne of the main objectives of Rare Disease Day is to bring public awareness of rare diseases to both policy makers and the general public.  Rare Disease Day is every February 28th and the month of February is devoted to raising this public awareness.

In honor of Rare Disease Day during February, Denise Crompton’s “Diagnosis: Rare Disease” and Sheryl Crosier’s “I Am Not a Syndrome – My Name is Simon” are on sale with publisher All Star PressBooks That Change Lives.

Crompton’s amazing book offers a compelling look at 13 families who received the diagnosis no parents ever wants to hear.  Diagnosis: Rare Disease” provides a heartbreaking exposé of what life is like for families that have a member with a rare disease. Crompton details the journey of each family, including her own, who has one or more children with a rare disease called Mucolipidosis.

The stories wade through the erratic diagnosis process, medical muck-ups, endless pain, a plethora of medical appliances and home modifications, special education, multiple hospitalizations and surgeries, unrelenting stress and the ever-present fear of death.

“Diagnosis” is a must-read for medical professionals and front-line workers who wish to learn how to communicate with families in these difficult situations.  Families dealing with a rare disease will recognize themselves in this book that is destined to be a classic in its field.

February 2021 Sale

“Diagnosis: Rare Disease” is on sale this month only for the discounted price of $3.49 (normally $4.97) in the Amazon Kindle Store.  Order the paperback version today for only $15.97 $12.97 plus s/h.

A portion of proceeds from your purchase go to fund scientific research for cures!

 On Sale this month only $12.97 plus s/h   View Cart

 

I Am Not a Syndome“I Am Not a Syndrome – My Name is Simon”

Simon Dominic Crosier was born on September 7, 2010, in St. Louis, Missouri. He was diagnosed with Trisomy 18, and lived for 3 memorable months before passing away in December 2010. Despite his disabilities, Simon had a huge impact on all who came into contact with him. Simon’s big, expressive eyes communicated a wisdom that transcended his innocence.

The book is about Simon’s short and meaningful life, his family and his wonderful caregivers. But more importantly, this story documents the Crosier family’s battle to advocate for their precious son. They had to overcome challenges put in their way by the medical community and even extended family members who never valued Simon’s fragile existence.  The hope is that this story will help motivate health-care professionals and anyone else that reads this account.

“We want them to understand that special-needs children are God’s gift to us all,” explains Sheryl. “Their lives possess inherent dignity and value, and they deserve the best care.”

Simon’s book is on sale this month only for the discounted price of $2.99 (normally $3.97) in the Amazon Kindle store.

Order the paperback version today for only $11.97 $9.97 plus s/h.

    View Cart

 

DIAGNOSIS – RARE DISEASE

“Destined to Be a Classic…”

“Regarding the topic of Diagnosis: Rare Disease, Denise Crompton amply demonstrates two of her important assets: one is the personal experience with ML III in her own daughter and two, her manifest ability to widen the subject and to bring a streamlined report on a number of other patients and families with either ML II or ML III. The book is [destined] to become a classic in the still little known world of very rare or orphan hereditary disorders.” ~ JG Leroy MD. PhD, Professor & Chairman Emeritus,  Univ. Hosp. & Univ. Ghent

“I Am Not a Syndrome – My Name is Simon” Now in Print

I Am Not a Syndrome - My Name is Simon
Now available in Print from All Star Press.

“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.

[rps-paypal]

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,I Am Not a Syndrome - My Name is 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)

 

“I Am Not a Syndrome – My Name is Simon” Now Available

“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.

Buy Now

“I Am Not a Syndrome – My Name is Simon” is also available direct from Amazon for the Kindle here, and in all e-book formats from Smashwords.

A portion of proceeds from every sale of this book will go to SOFT, Support Organization for Trisomy 18, 13 and Related Disorders.

“I Am Not a Syndrome – My Name is Simon” coming Wednesday

I Am Not a Syndrome - My Name is SimonAll Star Press – Books that Change Lives – will be releasing the e-book version of “I Am Not a Syndrome – My Name is Simon”on Wednesday, August 29, 2012. The 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.”

“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

“There is so much more to this story than reading of a little boy’s journey. 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.”

Pat Jonas, President and Co-founder

Australian Rare Chromo Awareness Network (ARCAN)

 

“I Am Not a Syndrome – My Name is Simon” will be offered in all online e-book formats and available everywhere e-books are sold.