Every K-T Kid should have little doubt that the world is theirs to conquer. I’m looking for K-T Companions and Champions who share this point of view and wish to address it in a manner heretofore not available. All proceeds from this endeavor are to be placed in restricted funds which will go to non-profit K-T support. We have set up a special email account to facilitate the organization and management of this project.
We can be reached via email at seen.YET.firstname.lastname@example.org
or by phone at (562) 225-0326.
What inspires and drives this unique project? I’m motivated by decades of friendships with companions, us “kids” with Klippel-Trenaunay Syndrome, and our loving caretakers, which include parents, wives, husbands, friends and family. These friendships have led me to deeply appreciate how great it is to be apart of a beautiful, extended family. We know and support each other principally through virtual chat rooms where we so often find ourselves comforting each other while melting away the sterile wall of technology. We have developed friendships that mirror, even surpass those made over the fence, at school, through progressive dinners, at family reunions. All of us likely recall the blind stab in the dark we made while looking for answers; as well as, the elation when we found one or more people who look like us or our child.
I’m quickly approaching 60 years old and it occurred to me when I gathered and scrapbooked photos of my nuclear family that I have family which extended beyond the pictures in front of me. Yes, this is you. Family, will you join me. Will you allow me to gather our pictures, our story into a family scrapbook to share with each of us. I see a coffee table memory book which captures us as we wish to be remembered. This is a private family book. I want it to celebrate us, to memorize our journey and our extended family.
Each day as our family grows with each new contact I am reminded that Klippel-Trenaunay Syndrome is a challenging condition which takes on many forms throughout our life. At first, it is a parents’ lament as unexpectedly they search for answers. Their love and compassion pushes them to seek the best care and lifestyle for their little ones. As kids, we wonder are we alone in the world. Are there magicians or miracle workers who can fix us? By adulthood, practical solutions are sought as we strive to be productive, self-sufficient citizens, playful partners, loving parents, and so on.
We find each other so often by chance, mostly by diligent research and in today’s world via the World Wide Web. We tell life stories. We listen. We learn. We quite frankly fall in love with each other. I comfortably submit that our biggest contribution, our biggest assist, is to the young kids born to, or like us. How so? Everyone of us is a beautiful, engaging person with a remarkable life story. We are courageous companions supported by courageous champions.
Rhetorically, what inspires us? Every parent who finds our family, who walks the path our parents walked, wants to know – what will my baby be able to do? … Do anything? … Do everything? Our response is a loud and simultaneous YES! … Yes, anything! … Yes, everything! … Yes, diligently and prudently support your little one as they grab for every gold ring they find interesting, let curiosity seek, let passion drive. In this vein I see a 100-plus page volume of life stories at the finger tips of K-T parents, or as still occurs in this day and age, newly diagnosed K-T adults. By way of example, just in this last year I met two adults near my age who had never seen another K-T companion. The tears in our eyes spoke volumes.
I’m asking all of us to submit for publication in our scrapbook an engaging photo or two along with a brief message or even a synopsis of our life to date that becomes a child’s dream book; and for us adults a comforting memory that we are not alone. We are doctors, attorneys, paramedics, psychologists, patient advocates, mothers, fathers, professional golfers, popular musicians, artists, entrepreneurs, motivational speakers, researchers, teachers, engineers, mechanics, race car enthusiasts, radio personalities, students, and so much more.
Imagine with me. Every K-T Kid in the world will now have access to a ready reference book that surely let’s them know they are not alone and that all things are possible.
We are working with professionals to produce;this Motivational Scrapbook. All helpers are under confidentiality agreements and prohibited from using or sharing any content outside of our endeavor. These scrapbooks would be only purchasable by: (1) those who participate in the project and/or (2) K-T Parents and K-T Companions who formally join one of our bona-fide support groups.
Please take note: If you have publishing experience, we are also looking for a small working group of motivated editors from among our family to review draft publications. There will be no administrative reimbursements or reserves held except for those needed for direct printing and shipping. The idea is to keep costs low while supporting the very organizations that brought us together. This is a copyrighted and rights reserved non-profit endeavor which will be strictly administered and protected.
Thank all of you, in advance, for considering this endeavor. PLEASE join us and celebrate our Klippel-Trenaunay Family and inspire generations to come.
William A. Lee
Seen, yet Not Heard © ®
kt | courageous © ® [… a Klippel-Trenaunay Scrapbook © ®]