Living with Trisomy 13

Living with Trisomy 13

Raising a special needs child is by far not an easy task.  Your daily life changes in ways that no parent can ever imagine possible.  Now add into that the fact that your child has a genetic syndrome that doctors and medical professionals term “incompatible with life."  Trisomy 13 is one of the syndromes, which was thought at one point to be fatal in all cases.  Well it’s not, our site is filled with over 100 albums of living survivors some who are in their teens and older.  Our mission is to erase the stigma that is attached to these children and show their lives through their own stories.

Living with Trisomy 13 was founded in 2005.  Since then our community has grown to over 200 + members.  We have resources on our site for families on all walks of this journey.  Prenatal resources, a DON’T MISS considering termination page, Trisomy 13 support resources and grief resources for our special Treasure Memory moms.  Our site is about embracing life and giving hope to those newly diagnosed families that have just been given devastating news.  I have met many moms on my journey and read a lot of stories.  I have read stories of parents who regret their termination decisions and dream of the child they could have had.  I have never read a story of a parent who regretted their decision to carry to term.

Our archive site has all our site history from 2005-2010.  Our current site has all our new current information and up to date album stories and pictures.  We have a daily news blog highlighting Trisomy stories in the news and other important articles and publications for families to read, as well as a Prayer Request page for the families in need.

Our mission is to provide detailed information of the survivors of this syndrome and the journeys of their lives while honoring the treasured memories that have passed on.  We provide support on Facebook, twitter, private YAHOO message boards, via phone and email and through our site  Not only do we provide support to parents but grandparents, siblings and extended families also.  These families are settling in to a new NORMAL life with their special needs child and we are here to provide them with any support we can.

Whether they are prenatal and looking for hope, living and looking for support and answers to daily questions or grieving for the child they lost we have support dedicated to their needs.  For the medical professional out there who visit our site, my hope is that you will be inspired and touched to look beyond the diagnosis.  These children are filled with the most innocent joy this world will ever know.  Text books and medical literature can only tell you so much.  When you look a child in the eye and allow them to tell their own story that speaks volumes.  Whether they can walk or talk, with all their disabilities these are still the children of our future.

If you are newly diagnosed and looking for help or facing a difficult pregnancy please email me [email protected].

Editor's Note:  Trisomy 13, also called Patau's syndrome,  is a chromosomal condition that is caused by full or partial copies of chromosome 13.  This condition results in severe intellectual disability and physical abnormalities such as heart defects, spinal cord abnormalities, extra digits, cleft lip or palate, or poor muscle tone.  Trisomy 13 occurs in about 1 in every 16,000 newborns.  It is often not inherited but rather caused by events during egg and sperm formation in healthy adults.

Your rating: None Average: 5 (2 votes)
Written by: Vanessa Hernandez See other articles by Vanessa Hernandez
About the Author:

Vanessa Hernandez is mom to Isabel and the Director of Living with Trisomy 13, a non-profit organization.  Find Living with Trisomy 13 online or follow on Twitter and Facebook.

We recommend:
Learning and Behavior Problems in Asperger Syndrome Black Jack Jetty
Learning and Behavior Problems in Asperger Syndrome I Go To School. An Interactive Reading Book Black Jack Jetty
USD 0.00 USD 21.95 USD 14.95