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 www.trisomy13archive.com
has all our site history from 2005-2010. Our current site www.livingwithtri13.org 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
www.livingwithtri13.org. 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 Vanessa@livingwithtri13.org.
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.