By Debbie Fenoglio
I was pregnant with my second son, Benjamin, in the late summer of 2011 when it was first suggested that my oldest son, Jackson, had ectodermal dysplasia.
Like many before me, I had not heard of ectodermal dysplasia. It was offered by our dentist as Jackson’s teeth were not erupting and he did not sweat. As far as I knew, no one in our family had the disorder. I immediately Googled ectodermal dysplasia and found the National Foundation for Ectodermal Dysplasias (NFED).
Over the next four or five months, we began the process of obtaining a confirmed diagnosis. We went back to our pediatrician, found a pediatric dentist that specialized in children with different needs, and went through the process of genetic testing which confirmed Jackson’s x-linked hypohidrotic ectodermal dysplasia (XLHED) diagnosis. Thus, our journey began.
To say it was overwhelming in the beginning would be a gross understatement. I found myself pouring over the NFED website and watching any and all videos I could to educate myself, to be the best advocate for Jackson that I could. It was in these beginning stages that I realized the importance of education and information.
I also knew that I would do absolutely everything I could to bring awareness to ectodermal dysplasias and families like ours.
It started with our prosthodontist, Dr. Peter Johnson, who we found through the NFED, speaking at a Family Conference with families going through the denture process. (Jackson received his first set in 2013 at the age of 4.) It continued through NFED Executive Director Mary Fete and the NFED along the same lines.
But it was not until the fall of 2015 when I received a call from Jessica Daugherty, our incoming Orange County Association of Legal Administrators (OCALA) Chapter President, that I was afforded the privilege of helping to organize and participate in, a big event that would raise over $25,000 for the NFED last year.
Jessica had called me to discuss me being a part of the OCALA Community Connection Committee. Every year, OCALA chooses a charity to represent, bring awareness to, and fundraise on behalf of. She had not yet chosen a charity so I asked that she consider the NFED and told her about Jackson. I connected her with Mary Fete and the rest is history.
Over the course of January 2016 to the event in October of 2016, our committee worked diligently telephonically, in person and at site meetings to put forth the best event possible to raise the most awareness and funds that we could for the NFED.
In the months that we spent putting together the event, it gave me the opportunity to educate and bring awareness to ectodermal dysplasias that I had not had before. Committee members, peers and business partners were eager and supportive to learn more about our NFED family. It was through their hard work, dedication and support that our event turned out to be such a success and that more people now know what ectodermal dysplasia is.
The event took place at the Marconi Automotive Museum on October 15, 2016. It was “Under the Big Top: A Night of Giving Hope,” and it did just that. Members of our NFED family, the Burrells, came and spoke and told of their journey with ectodermal dysplasia with their twins James and Keira.
Being a member of the NFED and the OCALA has changed my life for the better. It has and continues to offer me a support system that I could have never imagined when I started on this journey which extends beyond my amazing immediate family and friends.
I am profoundly grateful to be a part of this community, as my children are my greatest blessing. I look forward to the future of bringing more awareness and support to other families and the NFED.
I am a better parent and person because of the NFED and would encourage everyone to help support such an amazing Foundation. I know I look forward to the next time.
Debbie Fenoglio is a guest blogger for the NFED. She is the mother of Jackson, who is affected by ectodermal dysplasia, and an NFED volunteer. If you would like to become an NFED volunteer, sign up today!