Trisomy 18 Archives - SOFT - Support Organization For Trisomy

“This little girl, who cannot do anything to care for herself, is so filled with love that no matter how much she needs; she still gives far more than she takes. She is a beacon of light. She has taught us to believe in possibilities. She has taught us what it truly means to give…

“Whenever one of us needs a pick-me-up, we can always count on Tabitha to respond to snuggles with affectionate smiles. Although Tabitha may not contribute to society in the same way as her siblings, the lives she touches are forever changed for the better.” Since Tabitha is our 6th child, we opted not to do…

“Freya is sassy, sweet, silly and is always letting us know what she thinks. She smiles, laughs, plays, and keeps us all on our toes.” We first recieved Freya’s diagnosis through a blood test called an NIPT. I was approximately 20 weeks at the time of this blood draw. I have always taken the test…

We see life through a completely new lens, and we know she isn’t an accident, a fluke, or a clump of cells – but a valuable part of God’s beautiful plan, and a daily reminder of what’s truly important. In the Fall of 2018, we learned we were being blessed with another baby. I agreed without…

March 1st begins 2021 Trisomy Awareness Month As of today, SOFT has received 2021 Trisomy Awareness Month Proclamations from 24 states. Although March has been declared and recognized as Trisomy Awareness Month for over 10 years it has taken some time to get the month officially recognized by individual state. Eight states would have declared…

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 mortality among infants with either of two genetic disorders that cause severe physical and intellectual…

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 various Trisomy conditions. We invite all of…

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 just about sharing what a Trisomy is and how it can…

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.

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 think back to the day those words shook my…