Friday, February 4, 2011


I wanted to spotlight another great resource for those families that have a child, or are expecting the arrival of a child, with Trisomy 13.  Living With Trisomy 13 is a wonderful resource for information, connection and support.

From their welcome page....

Whether they are:
• on the prenatal journey...
• have a child living presently...
• those who’ve had a stillbirth, a child who lived briefly or many days, and those further along on their journey.

This amazing community of families, through their own grief and pain, reach out to help others on this very unique journey with Trisomy 13. All these families have lived and are living with a Trisomy 13 diagnosis and the reality of how it changes lives. With Courage, Grace, and Hope they continue on. Experiencing the transformation of grief into “Thanksgiving JOY.”

This site focuses on bringing together the families of children diagnosed with Patau Syndrome. Also called Syndrome 13, having a third (extra) number Chromosome 13. Trisomy 13 children have multiple abnormalities. Some include heart defects, brain defects, cleft lip, cleft palate. The most severe are visual abnormalities, omphalocele, proboscis and holoprosencephaly. Because of the many abnormalities, we believe all of these children are survivors if they reach their mothers arms. They are true miracles of life.

This web site shares stories of children who have Trisomy Mosaic (Trisomy Mosiacism), Partial Trisomy, Full Trisomy 13, as well as other Chromosome 13 Variations - Balanced & Unbalanced Translocations. 

Many only survive outside their mothers womb a few short minutes, hours or days. While others can go home and survive months or years. Sadly, many of the children with Trisomy13 (Patau Syndrome) do not reach their first birthday. 


Holly said...

Thanks for featuring T13!

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