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The FOD (Fatty Oxidation Disorders) Family Support Group™ was 'born' in 1991 as a way of
dealing with the sudden death of our 21-month old daughter, Kristen,
in 1985 from undiagnosed MCAD. Initially, she was 'diagnosed'
with Reye's Syndrome and it was not until one year later, when our
son Kevin was born and diagnosed with MCAD that we discovered Kristen
also had this rare metabolic disorder. Our third child Brian, is
a carrier of MCAD and not directly affected. To say the least, our
family has been changed forever by this genetic disorder.
Our mission
is clear...to connect and network with FOD Families and Professionals
around the world and to provide emotional support, Family Stories,
practical information about living with these disorders, and Medical
Updates to inform families of new developments in screening, diagnosis,
research and treatment.
Awareness
of these disorders is imperative for early diagnosis and treatment,
prompting us to be strongly committed to promoting expanded ~
universal and comprehensive ~ newborn screening for FODs (and several
other metabolic disorders) ~ possibly through future regional testing
centers. We do not want other families to needlessly go through
what we have experienced.
From our family to yours, we want you to know...
'You are NOT alone! We Are All in This Together!'
 Deb
& Dan Gould
Kristen, Kevin & Brian
The meaning of 'my rose'...
Dan
and I began the MCAD Family Support Group in 1991 to honor the memory
of our 21-month-old daughter, Kristen, who had died suddenly on
July 21, 1985 at our home in Champaign, Illinois, from what doctors
initially called Reye's Syndrome. By 1991, we had already been working
through our daughter's death from undiagnosed MCAD and our son's
diagnosed MCAD for almost six years and five years, respectively.
During those years, we felt as if we were the only ones in the world
dealing with this disorder, but we just knew there had to be others
out there going through similar experiences.
After discussing our concerns with Dr. Charles Roe,
a metabolic specialist and researcher who diagnosed Kristen (one
year post-mortem), Kevin (at birth), and Brian (an MCAD carrier),
we embarked on a journey to connect all the MCAD Families across
the United States. Dr. Roe's encouragement helped us get started.
To maintain confidentiality, Dr. Roe mailed our 'introductory' letter
to all the families that had been diagnosed through Duke University
Medical Center, which was where he was doing MCAD research at the
time. He is now at Baylor University Medical Center as Medical Director
of the Institute of Metabolic Disease in Dallas, Texas. He has been
our Medical Advisor for the Group since 1991.
When we first began with our 10-15 MCAD Families
in 1991, we did not have an established logo to distinguish
our Group. I (Deb) had first thought about using a simple rose design
that my sister-in-law had drawn for me to symbolize my own journey
through grief, but I felt that it did not fully reflect the larger
Mission of the Group, which was to connect and emotionally support
all of the MCAD Families in the U.S., and maybe someday across the
world!
In 1996, after we had expanded our Group to include
all of the Fatty Oxidation Disorders, we sent out word to our
250+ Families to help us create a Logo that would embrace the essence
of what we were trying to convey as a now international FOD Family
Support Group ~ that 'We Are All in This Together!'
In our July 1998 Newsletter issue, we 'unveiled' a
design created by Melanie and Dell Ruff of Richmond Hill, Georgia,
whose daughter, Anna, has MCAD. In their design, the heart and
chain symbolize all of our families in the group connected together
in spirit no matter how far apart we live. The 'broken link' represents
a missing enzyme(s) that each child/adult has that is dealing with
an FOD. Their design symbolically demonstrates that despite that
missing link in the metabolic process, we are all here to work together,
as families and professionals, toward medically dealing with these
disorders, as well as emotionally supporting each other.
THANK YOU Melanie and Dell for sharing your creativity
and truly giving meaning to being 'All in This Together!'
Some may wonder why royal blue and yellow were chosen as the FOD Group ‘colors.’ The power and meaning of these colors represent many facets of my life experiences before and after our lives were changed forever with the sudden death of our daughter, Kristen, from undiagnosed MCAD in 1985.
Before getting married and starting our family, Dan and I graduated from the University of Illinois (‘The Fighting Illini’) in Champaign, IL and the school colors are blue and orange. I wanted to incorporate our loyalty to the symbol of Illinois ~ 'Chief Illiniwek' ~ which embodies dignity, integrity, strength, and spirit by having blue as one of the colors ~ but probably more poignant for me is that Kristen’s eyes were the bluest of blue ~ thus I chose royal blue. And even though I grew up in the south suburbs of Chicago, I consider Champaign to be home ~ and it's also where Kristen is buried.
As for the yellow ~ I have always loved small yellow roses and Kristen came to love them as well. Yet after Kristen died, they became even more significant to me. They not only symbolize my journey through grief, they also symbolize Kristen’s love and eternal light ~ a light that will shine forever...
Deb Lee Gould, Director, FOD Family Support Group
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