[tri-wings] New Website for Trisomy 18

Hi everybody.  Just wanted to come out of my deep lurk long enough for 
you to find out why I've been in it!  When Jeremiah was diagnosed with 
T18 (in March 2002) the only way to find out answers to my questions was 
to come to this list-serve and ask them.  I'm pretty good about putting 
myself forward and finding out what I need to know - especially when it 
comes to my son! - but I knew there were other people out there who 
wouldn't be able to ask the right questions or even know what the "right"
questions are, and without an easy-to-navigate website or a good-quality book 
then they would never get accurate info about this condition - just their 
doctor saying "incompatible with life".

Anyhow, as many of you know I started work last year on a book about 
trisomy 18.  Although the book is 95% complete it is still awaiting 
funding to publish it ... I have a source that I'm hoping will come 
through for us in early 2004.  Since about May, though, I've been 
working with another t18 mom to develop a website with a lot of the same 
educational features on it as the book has in it - basic explanation of 
trisomy 18, and lots of answers to frequently asked questions, glossary 
terms, readings about t18 and living with a child with the condition as 
well what to do when your child dies.  

The site was launched at the beginning of October and is currently 
serving some 200 families.  We would really appreciate ALL OF YOUR HELP in 
supporting our target audience - which is parents who have a newly diagnosed 
child with trisomy 18, whether prenatal or neonatal.  Would you be willing to 
visit the site and support some of our parents of very young living t18 
children with your years of experience?  Or, if you have lost your child, would 
you be willing to support others who have just entered this stage of the 
journey?  The knowledge of those here on the list-serve is just so incredible 
that we'd really like to have your participation in helping us to give the most 
accurate, up-to-date information available to newly diagnosed parents.

Just to let you know, we have decided that regardless of what choices a family 
makes during their journey with trisomy 18 that we will support them in those 
decisions.  That means that some of our parents have said goodbye early to 
their child and some have chosen to pursue only comfort care.  But each family 
dearly loves their child and while we may sometimes disagree with their 
choices, they need the support of others who understand just how hard trisomy 
18 is to deal with to be able to move forward.

By no means do I want to stop these lists from being very active and making 
such a valuable contribution ... just that with a condition where so very 
little is known and talked about we need to pool our best resource - our 
parents - so that we all get the very best for all of our kids as well as all 
of those who come after us!

So, if you're interested, visit us at:  www.trisomy18support.org

Thanks!

Heather Morgan
wife to Trevor
mommy to Kaitlyn (3), Jeremiah Edward (August 17 - September 7, 2002) 
and Baby 3 (due January 30th, 2004)


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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