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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 sons
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 sons 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. Josephs 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.
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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,
Soft Cover, 576
pages, 6" x 9"
Perfect Bound
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Glendale, Arizona 85308
HIGHLIGHTS:
●
Lists of
SUPPORT GROUPS and RESOURCES for families living with VCFS,
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
●
Help with coping
●
Useful Tips
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Help in identifying symptoms
●
Laws that apply when advocating for
assistance
●
Information on setting up a special needs
trust for a child with VCFS
●
Help with feeding VCFS children
●
Developmental lists for children
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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 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 1:1800-4000 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
CORRECTED INFORMATION
Page 258
Special Needs Advocate for Parents (S.N.A.P.)
Phone: 1-888-310-9889
e-mail: info@snapinfo.org
FREE Family Ezine
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What
they are saying. . .
"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
"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
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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