By Alice Geismar
Seventeen years ago this November, my husband, Bruce and I were awaiting the birth of our second grandchild. Our first grandson, Jack was almost two and we were enlisted to watch him while Ruth and Keith went to the hospital. It was immediately apparent that Ryan had serious problems. He looked like a burn victim, with red, eroded skin over approximately 70% of his body. Because his skin was so eroded, infection was a constant problem. The doctors were not sure that he would survive. Our entire family was in shock.
Unlike many families with affected newborns, we were lucky to receive a diagnosis of Ankyloblepharon-Ectodermal Dysplasia-Clefting syndrome (AEC) within a day. We were immediately given information about the NFED and how to contact them. Within two days after Ryan’s birth, we had contacted the NFED and had spoken to Mary Kaye Richter, the founder and Executive Director at that time. She not only shared a wealth of information about the disorder, but most importantly was there for our entire family at a time of great emotional stress.
Everyone on the staff of the NFED made themselves available to us and to Ryan’s doctors. The NFED reached out to a variety of specialists with familiarity with the disorders. We quickly became part of a larger family – the NFED. We knew that although this would not be an easy road, the NFED was there for us and working with us to help this one tiny, little, red-skinned boy survive.
Our story is a happy one. After many challenges and struggles, Ryan is a remarkably charming 16-year old who just started 9th grade at his local high school. He loves music and girls – fairly typical for a modern teenager. He is a friendly, loving, happy young man.
When Ryan was a year-and-a-half old, and was medically stable, Ruth and Keith started planning a fundraising event to benefit the NFED. Ruth wanted to give back to this organization that had embraced our family and Ryan. She asked for our help in hosting a Halloween Bash as a giant cocktail event to raise funds for treatment and research. It was hard not to get swept up in her enthusiasm. How could we not help support this wonderful foundation that had made such a real difference for our family?
For twelve years, we hosted a hugely successful Halloween Bash gala event in New York City with a silent auction, guest speakers and an event journal. In 2013, the event became a “virtual event” with online auction, allowing people around the world the opportunity to participate. The importance of our work has not diminished, nor has the importance of this organization in our lives. Our Event Committee continues to work to develop resources and contacts, secure donations and silent auction items. To date, the Halloween Bash has raised more than $3.7 million dollars which has allowed the NFED to host medical conferences, provide patient support, and fund research which has led to the identification of specific genes responsible for a various forms of ectodermal dysplasia. The Bash has also provided funds for families unable to afford dental treatment through the treatment fund. We are very proud that our Halloween Bash has made a difference in the lives of those affected by ED, just as the NFED has made a difference in our lives.
We still consider ourselves grateful to the NFED for embracing our family at a time of great need. We consider ourselves lucky to be able to give back to this wonderful organization that has given us so much.
To help spread the word or to make a donation, visit the Halloween Bash website.
Have you considered holding a fundraiser to benefit the NFED? Contact Seth Ferris, NFED Family Fundraising Coordinator, at email@example.com or call the office at NFED 618-566-2020 to start planning your fundraiser. You can also learn more on our website .
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