The PFFDvsg was formed in January 1997 by Mike and Cindy Malloy in Ohio. Mike does most of the typing while Cindy keeps the kids out of my hair and does the proofreading. I work full time as a network technician and Cindy works part time as a registered nurse. In case you were wondering why my writing style is so dry, it's because my job deals with 1's and 0's, things that either work or don't work, and not many in-between gray areas. My only formal writing training was a technical writing course which emphasized clear, unbiased presentation of the facts. I know I tend to let my biases creep in to the PFFDvsg, but I'll do my best to present "just the facts m'am".
While we serve as the editors to get the stories on the 'net, the real writers
of the PFFDvsg are the parents who kindly agree to write their stories.
The goal of the PFFDvsg is to be a PFFD information source and a 'virtual support group' for parents of children with the PFFD birth defect. Our original goal was to concentrate on the virtual support group portion, but since that has been growing very slowly we've decided to expand the information section. I only know of two PFFD articles elsewhere on the 'net, so we'll do our best to get as many posted as I can get my hands on. If you have any good PFFD articles, please contact me for details on how to send them.
We still feel that the most valuable part of the PFFDvsg will be the virtual
support group where we can share stories and learn from folks who have been
through it already. If you've read any of the stories and found them helpful,
please consider sending me your story. It doesn't have to be fancy - just
share your experiences and feelings.
When our daughter Jennifer was born with PFFD in 1993 we were naturally shocked and upset. As a technician, my first goal was to research the problem so that we could formulate a treatment plan. I had no internet access, so we relied on others for information. An uncle mailed a list of abstracts that he got off the 'net - I took it to a medical university library and was only able to find one of the articles. Our doctor gave us a copy of an article from a textbook. Our prosthetist gave us a copy of a 1969 National Academy of Sciences symposium. While all of these helped, it took months to get only 3 items, and most of them were so full of 'medicalese' that we found them very hard to understand. I remember thinking that someone needs to write a 'plain english' article about PFFD that could be easily available. Well, the rapid growth of the World Wide Web solved the availablity part, and hopefully I solved the 'plain english' part with my PFFD: A Parent's Guide.
Our major concern in those early days was how would this PFFD affect our
daughter Would she be able to walk, run, dance, play sports, etc.? The list
could go on forever. Luckily, our doctor's receptionist had an 18 yr old
son with PFFD. She came and talked to us and answered all of our questions
and eased alot of our fears. She was like a gift from heaven. I vowed
that someday I would repay the favor and try to help someone like she helped
us. So, I guess you could say that the PFFDvsg is my way of saying 'thanks
Donna'.
The PFFDvsg resides on a server at our internet service provider (Internet
Ohio) in northeast Ohio. We are currently limited to 25Meg of disk space,
so we are currently limiting our files to mostly text. If we find that we
have to add photos and images to make the PFFDvsg more effective, we'll do
our best to lease more space.
I guess we could say that the idea for the PFFDvsg was planted when Jennifer was born in 1993, or actually when we had the great fortune of meeting Donna later that same year. I never thought that I'd be creating a PFFD website, but then a random sequence of eerily related events led to the start of the PFFDvsg website.
12/25/96 After working with PC's at work for years, Santa finally brought us one for home. I'm sure he had 'mutimedia learning games' for Jennifer in mind, but he did remember to include a modem.
01/15/97 During break at work, I decide to use Infoseek to do a web search for PFFD just to see what's finally available. I was shocked to find that 1 of the 16 links was for a story in our small town paper. That story quoted our prosthetist - what a small world! But, the most interesting link was to a Rare and Genetic Disorder bulletin board - a father was searching for PFFD info because his son was just born with it. Sounds familiar - hope he has more luck in 1997 than I had in 1993. Sent him an e-mail to see how he made out. The other links were typical for a web search - a couple for a fire department and one for Freightliner trucks. One link was to Ovidiu Toma's page in Romania and one to the Wheeless Texbook. More than I'd seen in the past, but still no comprehensive site dedicated to PFFD - maybe someday somebody will post a lot of good PFFD info.
01/17/97 Got an e-mail reply from the father searching for info. Said that in 2 months he had only gotten 2 replies from his post on the bulletin board. He said that his info search was not going too well, and he too wished that there was more PFFD info on the web.
01/18/97 Signed up with Internet Ohio for web access for the new PC at home. The account includes 1 Meg of free disk space for a personal web page. Big deal - what am I going to do with 1M of web page space?
01/19/97 The theme of the Sunday sermon is that God has a plan for all of us - we just have to be open to the call. Am I being called? New PC, still very little PFFD info on the web, 1M free disk space......but wait, I don't know a thing about creating web pages.
01/21/97 A web search for web authoring tools turns up AOLpress - gets pretty good reviews and best of all it's FREE! Can't be true? Yep - created by GNN (before they were bought by AOL) as a service to the web community. Is this God's way of making that call just a little bit louder?
01/23/97 The PFFDvsg is officially open for business with a basic home page with a few links to some helpful info.
02/06/97 Much to our surprise, we received two e-mails within the first two weeks - one from someone only 30 miles away. Considering how rare PFFD is, we didn't expect any contacts for several months. Maybe we've hit on an unfulfilled need.
05/23/97 After only four months online, we've already heard from over a half dozen wonderful people. Somedays I get frustrated by the amount of time it takes to update the PFFDvsg and to respond to e-mails, but then we'll get an e-mail from a parent thanking us for the helpful info they found on the PFFDvsg. Knowing that we have helped even just one person has made this all worthwhile.
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