BLOGS
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...
Verity Jacobson – Trisomy 18
"Verity’s life is anything but futile! She brings love and joy to our household every single day. Her smile and laugh light up our world." I had never heard of Edwards Syndrome before I got the phone call, but it was the day that changed our lives. Diagnostics...
Carter R – Trisomy 13
"I would do it all again just to have the chance to hold my baby one more time." On April 4, 2020 my life changed forever. I went into my 13 week ultrasound only to be told the baby was showing signs of Trisomy 13. I had no idea what this condition was, everything was...
Aaliyah Pineda – Trisomy 13
Aaliyah's life is truly a blessing. She's our angel. Our miracle baby. A hungry warrior. My baby girl's name is Aaliyah Esperanz and she has trisomy 13. Ummmm. We didn't know anything ahead of time. I had a a normal pregnancy - no red flags. She was born 3 1/2weeks...
Video – SOFT 2020 Virtual Conference Closing Event
This video is a replay of the SOFT 2020 Virtual Conference delivered by Josh Bradley.From the SOFT 2020 Virtual Conference. https://youtu.be/Rm6kJvN0_5Y
Video – Update 2020 on Seizures, Light Sensitivity and Headaches
Dr. Steven Cantrell - Seizures, Light Sensitivity and Headaches From the SOFT 2020 Virtual Conference Dr. Cantrell’s workshop, Seizures, Light Sensitivity and Headaches will review the many triggers causing seizures and how to protect your child. Nutrition, Eye...
Tumor Risk and Surveillance in Trisomy 18
Dr. Stephen BraddockTumor Risk and Surveillance in Trisomy 18. Dr. Braddock discusses Wilms tumor and other conditions that a child with trisomy should be monitored for. From the SOFT 2020 Virtual Conference. https://www.youtube.com/watch?v=TsFS9-J03n4 About Dr....
Video – Support for the Grieving Sibling
Laura Lindroth, Director of Programming and Community Engagement at Rainbows for All Children, discusses Support for the Grieving Sibling. From the SOFT 2020 Virtual Conference. https://youtu.be/xfqQlAN9nsk About Laura Lindroth:Laura Lindroth is Director of...
