I was so excited today to open my email and find that a new law will soon be signed by President Bush. This new law will give parents who have received pre-natal diagnosis of Trisomy 13, 18, 21 (Down's) and other genetic syndromes access to information about their diagnosis and networks that could offer assistance and support. This is a BIG victory for families (like us) facing those difficult decisions. We were blessed to have doctors that (for the most part) supported us and gave us all the info they could. We also had friends and family that supported us and gave so much during our journey with Philip. I have been so amazed and saddened by the stories from other familes that were not so lucky. They had doctors and worse, friends and family, that were not supportive or helpful. They were given inaccurate information and made life altering decisions based on that bad info; having to live with the consequences. Hopefully this new law will insure that families are making decisions based on facts and not opinions. So they can be really comfortable with all the decisions they make regarding their little babies. Here is a link if you want to read more about the specifics.
http://www.trisomy18.org/site/DocServer/S_1810_passed_by_House.pdf?docID=1041
Of course with this good news, I have spent much of my day thinking about my little Philip. Here he is, with a few new pics of little brother Cristian.
1 comment:
Thanks for sharing the good news, Stacey. I love the first picture of you, Carlos, and Phillip...it is bitter-sweet. You are Carlos are such amazing parents.
Post a Comment