Jack Kriz serves as a Family Liaison and Member of the Board of Directors for the National Foundation for Ectodermal Dysplasias. He has firsthand experience with the rare condition as he is affected by the type of ectodermal dysplasia known as ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. Jack has been active with the NFED for 10 years raising awareness and funds, participating in Grand Rounds, presenting at their National Family Conferences, and providing outreach to families. He lives in Oregon with his wife and daughter and is an architect with Mildred Design Group.
It’s a simple thing to do. Kids do it all the time. By age four, five, or six, they jump into their shoes, tie ‘em up, and race out the door to play. I can remember clearly, sitting on the hearth of rugged red lava rock in our 20′ x 20′ farm house, a high top leather boot on each foot, leather laces through six or seven sets of eyelets, four pair of hooks, and there hung the lace ends, waiting impatiently to be tied…. I so much wanted to be like my two older brothers and tying these boots was another way to be like them. Dad had said I had to learn to tie my shoes before I went to kindergarten. My siblings had learned it before going to school, so I would too. My two brothers and my sister showed me how they tied their shoes, but I had to figure out a different way.
I was born with Ectrodactyly–ectodermal dysplasia–cleft syndrome (EEC), a condition that in my case resulted in not having two fingers on each hand and two toes on each foot (Ectrodactyly). This is not a life-threatening condition by any means, but it requires adjustments as one deals with life’s activities. The fingers I do have have joints that are fused such that no one finger can be made straight. Learning to tie shoes becomes problematic when those showing you how have all those ‘extra’ fingers in the mix. I mastered this now insignificant feat in my own way, but not without the significant influence of my family. Some wonder how one deals with a condition like EEC? How did I manage to go through school? How did I figure out how to hold a pencil that works for me and therein learn to write? Trial and error, that’s how – like most kids, just in a different way. Years later at the University of Oregon, I was using that same grip on an Exacto knife, cutting balsa wood for scale building models.
When asked where my success comes from, I point to my Mom and Dad and my siblings: they all contributed in fostering an atmosphere of positive attitudes with a can-do spirit, mixed in with the typical sibling rivalries and a few “he hit me first!”. My parents got no instruction manual for my condition when I was born. In fact, in the mid-1950′s there was barely even a name for it. With instinct and love, and just going about life with what you have, my family helped me become a confident adult. And now, as a fellow 59 years old, there are new challenges. Holding a cell phone in one hand while dialing a number and right clicking the mouse while still grasping its body (as an architect, the mouse is the main tool I use in this age of computer aided design) are two of the new skills to master in my adult life. But these new challenges have been met with the skills refined from my youth, now with a wonderful wife and daughter of my own added to the family ‘support’ group.
As I grew up, I came to understand how important a supporting family and friends are to a person’s success, that teachers and other adults are key ingredients for achievement. How one approaches a task or activity, and the sincerity of your support group, very much determines the likelihood of success. Do others cheer you on or, are they minimizing your efforts, as if you are trying to achieve the impossible? If my family had just assumed I could not learn to tie my shoes, and not pushed me in my efforts to do so, then I would have been wearing Velcro shoes the rest of my life! I owe so much of my life to them and am so thankful for all that they’ve done for me – especially for their understanding that, whether our lives are “normal” or whether we’re living with a condition that creates a “different normal”, each of us must take the life we are born with and make it full.