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