RESOURCES TO HELP FAMILIES THRIVE

22q - VCFS:

The Chromosome 22q11 Deletion

Velo Cardio Facial Syndrome


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Revised Edition!!

MISSING

GENETIC PIECES



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Missing Genetic Pieces Cover 

MISSING

GENETIC

PIECES

Strategies for Living with VCFS

The Chromosome 22q11 Deletion

 

By Sherry Baker Gomez

 

Cover Design and Illustrations

 by Kas Winters

 

Foreword by

Dr. Robert J. Shprintzen

 


Missing Genetic Pieces

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Missing Genetic Pieces    

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ONLINE RESOURCE LIST FOR FAMILIES

There is also a resource list included in the book, Missing Genetic Pieces.


HIGHLIGHTS:

Lists of SUPPORT GROUPS and RESOURCES for families living with VCFS/22q, including all contact information

 

Lists of helpful BOOKS for families, teachers, counselors and medical professionals

 

Useful Websites for families and professionals

 

Illustrations to clarify anomalies such as heart and palate problems

Tetraology of Fallot

Personal Stories, many with photographs, of children and adults living with VCFS/22q

 

Help with coping

 

Useful Tips

 

Help in identifying symptoms

 

 

Information on setting up a special needs trust for a child with VCFS/22q

 

Help with feeding VCFS/22q children

 

Developmental lists for children


CORRECTED INFORMATION

Page 258

Special Needs Advocate for Parents (S.N.A.P.)

Phone: 1-888-310-9889

e-mail: info@snapinfo.org


 

MISSING

GENETIC

PIECES

Strategies for Living with VCFS

The Chromosome 22q11 Deletion

 

A comprehensive HANDBOOK for Parents, Professionals and Anyone wanting to know about Chromosome 22 Deletion (22q11) and its dynamics


Finally, a book with some answers for families living with

22q Deletion, VCFS,

Velo-Cardio-Facial Syndrome!


As the light becomes brighter in the field of genetics, it is said that Velo-Cardio-Facial Syndrome (Chromosome 22 Deletion) or VCFS, may prove someday to be the MOST COMMON genetic disorder affecting mankind. Researchers today believe that it can affect 1:2000 births.

The purpose of this book is to:

 EDUCATE:  to teach parents, teachers, medical professionals, counselors and others about this condition.

ADVOCATE: Strengthen the voice of those with VCFS and their families by learning to take a stand on their own behalf, and by giving power and validity to family concerns.

REFORM: Improve the quality of life for those with VCFS and their families, by offering them a comprehensive learning experience free from blame, shame and fear.

Since babies are not born with VCFS engraved on their foreheads, it takes an awareness of the syndrome to recognize the symptoms and to make a correct diagnosis.

VCFS was defined in 1978 by Dr. Robert J. Shprintzen. It is not uncommon for patients to get misdiagnosed. There are at least 187 anomalies associated with Velo-Cardio-Facial Syndrome.


Missing Pieces

This book includes:

• A History of VCFS

• A Description of VCFS, List of 187+ Anomalies associated with 22q11 Deletion

• A list of Medical Specialists

• Systems Affected: Heart, Pulmonary and Respiratory, Kidneys, Anal Anomalies, Ears, Eyes, Facial Features, Hormone Difficulties, Immune System, Dental, and Palate

• Feeding and Pain Issues

• Development: Developmental Issues and Stages, Newborn Conditions, Potty Training, Psychophysiology, Biofeedback, Emotional Development and Social Skills

• Education: Accessing services, Individual Education Plans (IEP), Non-Verbal Learning Disorder (NVLD), Grade School Ages, I.Q. Tests scores and Neuropsychology

• Speech: Speech and VCFS, Teaching Babies Sign Language, Central Auditory Processing, Fisher's Auditory List

• Behavioral Problems: Behavior list and Puberty

• ADHD

• Psychological Issues: Bipolar and Schizophrenia

• The COMT Gene: Pain and OCD (Obsessive Compulsive Disorder)

• Negotiations

• Advocacy

• Housing and Group Homes

• Finances and Trusts

• Support Systems for Families

• Stories from Families Living with VCFS

• Marriage, Relationships and VCFS

• Parent to Parent Talk

• Parents Speak Out: Tips from Families with VCFS Children

• List of Medications

• Medical Dictionary



VCFS support Pin 

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Support 22q

Awareness

Each of us can use our voice to increase public awareness of 22q and we have a great too to help

us. This eye-catching pin is an educational conversation starter

wherever it goes. Order yours today.

$5.00 PLUS SHIPPING.

Please list color choice in box for questions or more information.

About the Author

Sherry

Baker-Gomez

 

Photo by Bill Dooling

Sherry Baker-Gomez is the parent of a child with VCFS. Her son, now 25, was finally diagnosed with VCFS at 18 years of age after a long medical history and searching for answers. Sherry, herself, had been so desperate for answers after many years of struggling with her son’s undiagnosed disorder; that she became a nurse in an effort to understand the symptoms she saw in him and what they meant. Then she realized that many other parents needed answers and needed to know where to turn, so she began writing.

Committed to VCFS education, Sherry started gathering information on resources and, stories that offered support. Working along with other parents and professionals, Sherry has organized this collection of information into a comprehensive handbook that brings information and resources to parents, professionals, and others under one cover.

Originally from Salem, Oregon, Sherry moved to Arizona for her son’s health in 1982. Here, she and her husband both became licensed contractors to support themselves, their two children while Sherry returned to school. A cosmetologist at the start, Sherry pursued classes in psychiatry, counseling, architecture and nursing. Along the way, she was also heavily involved in volunteer work at Oregon state mental hospital, Oregon state prison (Bible education and counseling), St. Joseph’s hospital, AZ as well as financial, marriage and teen counseling, working at an Alzheimer care center, doula duties and physical therapy assistant, to name a few.

Sherry is determined to pursue the campaign for VCFS recognition, and make VCFS a recognized name in the community. This book is funded by her own funds, at her own risk, and is not sponsored by any institution or outside source. The information presented is the result of her own search for answers and resources. A portion of the proceeds from the sale of each book will be donated to organizations that benefit VCFS disabled children and adults.


What they are saying

 

"When I met Sherry 4 years ago, we *met* when she emailed the VCFS Educational Foundation, looking for information.  She was too shy, then, even to give me her phone number via email, saying that she was a "scaredy cat" and would call me.  One day the phone rang and this quiet, timid voice said, "Hello, Kelvin... this is Scaredy Cat" , and that was then.  What a contrast to today's vibrant, dynamic Sherry Gomez -- "scaredy cat" no more -- who has overcome her timidity and blazed this information trail with her book, to help brighten the path for other parents and loved ones of children -- and adults -- with VCFS.  She has done a GOOD THING, and without regard for personal inconvenience, to bring the VCFS community this work.  When you read it, know that it represents not only a valued source of information and perspective, but also a tale of personal mastery for woman who used to be just a "scaredy cat."  Sherry... congratulations.  You followed through."


With great respect,
Kelvin P. Ringold
Administrative Assistant
VCFS Educational Foundation, Inc


"This essential handbook offers the reader an insightful look at the pivotal issues concerning 22q11 deletions. Hence, the author gives 
us a thoughtful analysis of the clinical and the personal world of those dealing with this deletion. I commend her"
 

 

Paul Ling Tai M.D., author, surgeon, chemist, and inventor. 

Michigan


"What a wonderful resource!! This sensitive, beautifully written and fascinating conversation with professionals, parents and caregivers is a true joy. Readers will find this book heart warming, enlightening and uplifting. "

 

Clare B. Jones, Ph.D. author, diagnostic specialist, and nationally recognized presenter. Scottsdale, AZ.


"I want to applaud the people who have work diligently to put together the information related to VCFS for families and healthcare providers.  This should help the families cope with complex issues and systems.  It should also enhance their ability to advocate for their children."

Martha Frisby - MHA-Children's Rehabilitation Services-St. Joseph's Hospital, AZ


Ms. Gomez has gathered information on a large variety of characteristics associated with the 22q11.2 deletion and written about them in a way that is easy to read and understand.  This book will fill a void in the libraries of families affected by Velo-cardio-facial Syndrome and will help parents ask the right questions of their own child's health care providers.  It is a wonderful accomplishment. 

 

Karen J. Golding-Kushner, Ph.D., Executive Director, Velo-cardio-facial Syndrome Educational Foundation, Inc.


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08/19/15

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