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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Trisomy 18 & 13 Resources

First off, what exactly does "Trisomy 18" mean?  It means that there are three of the 18th chromosome on every cell in the body.  This is for "full Trisomy 18."  Even more rare is "mosaic Trisomy 18" which means that not every cell has the third 18th chromosome.

You can easily find scientific explanations of Trisomies online.  Here is an easy to understand definition.  D.V., a genetic counselor that we have talked with explained it this way: "All of our chromosomes contain information vital to survival, so when there is too much information (as with a trisomy when there is an entire extra copy of the chromosome) or too little information it affects development. I often use the analogy of a recipe (e.g. a cake that calls for two eggs, but three are used, with some ingredients being extra or missing having varying effects on the outcome)."

Websites:

Support Organization for Trisomy 18, 13, and Related Disorders  (known as SOFT) - resources, publications, articles, family support, etc:  http://www.trisomy.org/


Trisomy Talk - lots of good info. plus webinars with important topics: http://trisomytalk.com/


Prenatal Partners for Life -  : http://www.prenatalpartnersforlife.org/


Now I Lay Me Down To Sleep - free remembrance photography:  www.nowilaymedowntosleep.org


Hope for Trisomy - http://www.hopefortrisomy13and18.org/


Living with Trisomy 13 - www.livingwithtri13.org
 

Hope for Trisomy: http://www.hopefortrisomy13and18.org

Noah's Never Ending Rainbow:  http://noahsneverendingrainbow.org/ 


Facebook Groups:

Trisomy 18 Mommies (for parents of Trisomy 13 children too): http://www.facebook.com/groups/T18Mommies/ 

TrisomyTalk - www.facebook.com/TrisomyTalk

Hope for Trisomy - www.facebook.com/TrisomyNewsFeed


Trisomy Tea - www.facebook.com/groups/TrisomyTea


Books

SOFT sells "The Book" on Trisomies 13 & 18 called: Care of the Infant and Child with Trisomy 18 or Trisomy 13 This book is available in paperback or as an e-book.

Gift of a Lifetime booklet by Tammy Tate on perinatal care, ideas if you receive the news while pregnant that there's something wrong with your baby: http://www.heartlink.org/pdf/giftofalifetime.pdf
(You can purchase the booklet here.)




Blogs:

Guiliana (mosaic Trisomy 18):  http://www.g-giftoflife.blogspot.com/

Julia (Trisomy 18): http://jennychildress.blogspot.com/

Faith (Trisomy 18 and monosomy 21): http://littlefaithtobigfaith.blogspot.com/

Lily (Trisomy 18): http://iseeloveblog.blogspot.com/

Aaron (Trisomy 18): http://compatiblewithjoy-trisomy18.blogspot.com/

Hannah (Trisomy 18): http://kwantfamilycorner.blogspot.com/

Alegria (Trisomy 13): http://alegriaelizabeth.blogspot.com/

Caleb (Trisomy 18):  http://calebsjourneyfromgod.blogspot.com/

Note:  a quick Google search will reveal quite a number of other Trisomy blogs. This is just my list, of those that I read the most often.

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