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.

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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,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.