(Reprinted from "Wavelengths,"
the newsletter of the International Prader-Willi Syndrome Organization)
About a year ago, I hooked up with the Internet, and ever since then, I have been continually surprised by the wealth of information available, as well as some unexpected bonuses, the far-away friends with whom I share laughter and tears as we tread the same path, wherever we may live. As a result of my net connections, when I recently was faced with a personal crisis, one of the first persons to reach out with kind and understanding words of support was one of my PWS cyberpals on the other side of the world! {{{{{Linda}}}}}... (that was me giving Linda a cyberhug!)
As a founding member of the Arizona Chapter of PWSA, and as a continuing board member and activist, my commitment has been mostly devoted to sharing information and offering support to the families in our Sunny State. But that didn't stop me from setting up a web site for our chapter that would connect us to the rest of the world. Besides sharing pictures and recipes and stories from out newsletter, "The Prader-Willi Nilli News," I included my email address and an invitation to exchange information on a personal basis.
My venturing into the world wide web has resulted in communication from families and professionals all over the world: Canada, Japan, Germany, France, New Zealand, and even Malaysia. It has been a great joy to discover other chapter's home pages, to read their stories and learn about their families. We all share something in common, a never-ending struggle with Prader-Willi Syndrome and a warm bond with a special person who usually has some unique gifts to share with us, when we can see past the stubborn persistence!
My daughter Karie has received some interesting email from her cyberpals in other parts of the world. One young man, Johnny in Ontario, saw my web page, and wrote some wonderful letters to me and to Karie. He has given permission to share what he has written with others. These letters are unedited,
so you won't miss a thing! Perhaps after reading them, you will want to join in on the cyberfun of internet communication. Even if you don't own a computer, you might be able to log on at a local public library or non-profit agency. Ask around.
And when you do log on, be sure to check out my web page at http://www.oocities.org/HotSprings/Spa/2131 or try http://pwsaa.home.ml.org and be certain to include that extra "a" if you want to get there. See you in cyberspace! :-) -- Teresa Kellerman
Prader-Willi Nilli News