Nothing Can Replace the Human Connections and Interactions

By Kristin Matus-Kelso

I first attended the NFED National Family Conference in 2006 when my youngest daughter, Ally, who is affected with EEC syndrome was just 1 1/2 years old.  I remember questioning myself that year as to whether I should attend, was this really “necessary” since she was so young and wouldn’t remember it anyway, and would I really learn anything more about her condition beyond what I could find online or in printed materials from the NFED?  Despite my apprehensions, I decided to attend.  I guess my desire to travel to meet the people (NFED staff) with whom I’d spoken to on the phone and to possibly connect with other families who had similarly affected children “won out” over the questions that had been going through my head.  The conference did not disappoint.  In fact, it exceeded any and ALL of my expectations!  My family has attended every conference since then (except 2007 due to medical treatments at the time) and I have every intention to faithfully attend every Family Conference as long as it’s possible for us to get there.

So, why do I speak about Family Conference attendance with such conviction?  It’s the people.  P-E-O-P-L-E.  There is nothing that can replace the human connections and interactions that you experience at conference.  I can guarantee that you WILL meet someone who either looks like you or your child, has walked down the same road of medical treatments, has encountered the same school or sports challenges, that you can connect with because of ectodermal dysplasia.  In a world where this condition affects 7 out of every 10,000 individuals – we are no longer the minority, but the majority at Family Conference.  There are no other means technologically or otherwise that can replace the face-to-face conversations, sharing of joys and triumphs, lamenting of challenges, and possibly shedding tears with someone who “gets it” that come from being together at the conference.

In 2006, we met the Huxman family, who at that time, had one son affected by EEC syndrome.  We met the night of the 25th Anniversary Gala and spend the next four days sharing, laughing, and connecting with one another.  Our families blended together seamlessly and everyone became “mom”, “dad”, and “grandma” to one another’s kids.  Over the past six years, we have planned our family’s summer vacations with the Huxmans in conjunction with the Family Conference location.  Without having attended that Family Conference in 2006, the paths of my family from Virginia and the Huxmans from Kansas never would have crossed.  While my daughter’s condition is something I would have never wished for, I am grateful that because of her, I have met wonderful people through the NFED and at the Family Conference that have touched my life more than I could have ever hoped.  One of my mother’s favorite quotes is by Edwin Markham which says, “There is a destiny that makes us brothers, No one goes his way alone; All that we send into the lives of others, Comes back into our own.”  Whether ectodermal dysplasia is your “destiny” or something that you’re just coming to terms with, the Family Conference will assuredly reinforce that none of us goes his way alone in this journey.

Hope to see you in Orlando this week!