Bryson's Blog

Living with Trisomy 13

Tuesday, October 02, 2007

Spreading the word

http://specialchildren.about.com/od/inspirationalvideos/youtube/tri13a.htm

I'm always looking for ways to link up this blog to other websites that feature stories of inspiration and information on children with Trisomy 13.

If anyone who has visited here knows of any websites that I may place a link there to bring them to this blog, please e-mail me or leave a comment on the blog. I also like to place a corresponding link in my weblog to those sites; so that when a parent-to-be, that has a newly diagnosed child with Trisomy 13 visits here; they can follow one link to another and learn as much as they can.

When we found out at birth that Bryson had Trisomy 13, it took forever and ever to even find anything written about it. (as well as finding anything up to date!) All I could basically find were things on how bad it was and volumes of material on the mortality rates.

I want to shed light on it that it isn't necessarily a death sentence for a child as many uninformed perinatalogists and doctors may think. There are many survivors! When I listed Bryson on the living with trisomy 13 website, there were only 33 children listed as survivors. Go there now and you will see that there are now 76 children!

Have hope, have heart and stand up for the health care your child deserves and learn as much as you can. Your knowledge is power!


http://www.livingwithtrisomy13.org
http://rarediseases.about.com/od/rarediseasesp/a/patau05.htm
http://healthresources.caremark.com/topic/topic100587269
http://www.trisomy.org/index.php

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