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Newborns with trisomy 13 or 18 can benefit from heart surgery
Republished with permission. Infants with the genetic disorders trisomy 13 or 18 are more likely to survive if they undergo heart surgery, a study from researchers at Stanford and the University of Arkansas has found. Heart surgery significantly decreases in-hospital...
2021 SOFT Trisomy Awareness Month Video Blast
Join us for the Trisomy Awareness Month video blast! The Trisomy Awareness Month video blast is coming and we hope you will join us. We are going to blast social media with short 60 second videos to inform and educate people about our SOFT kids and their...
Trisomy Awareness Month Products and Tools
March is Trisomy Awareness Month! Trisomy Awareness Month is the time when we share awareness and education of Trisomy conditions, celebrate our children who are beating the odds and remember our sweet Angels who left us far too soon. Trisomy Awareness Month is not...
2021 Trisomy Awareness Month Product Order Form
Trisomy 18 Long-Term Survivors Survey
If your child with Trisomy 18 is or was a long-term survivor (1+ years) please help with this study conducted by the Trisomy 18 Registry.
Claire L – Trisomy 13
We have had a really happy, healthy second year with Claire! She’s been to the beach and is learning to crawl. She loves music, especially Raffi, and is very ticklish. At our 20 week anatomy scan, we were shocked. Our baby’s eyeballs were so underdeveloped, the doctor...
Lillian K – Trisomy 18
We make the most of our situation. We laugh through hospital admissions. We sing through the storm. And we love more fiercely than we ever have. All because of one extra chromosome. ‘Trisomy 18.’ ‘Incompatible with life.’ ‘Why would anyone want a baby like that?’ I...
Omar Gonzalez – Trisomy 13
Though this has not been an easy journey, it is one I would pick a million times over, just to meet our sweet boy. My husband and I first learned something was “wrong” when I was about 11 weeks pregnant, with Omar, who has full Trisomy 13. The doctor told me Omar had...
Journey Hoffman
"Journey is not and never will be a diagnosis, she is Journey, and she has her own story to be written by the hand of God." Theodore Roosevelt wrote, “Never throughout history has a man who lived a life of ease left a name worth remembering.” Journey Love’s name was...