BLOGS
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...
Video – Trisomy 13 and 18: The Basics
Dr. John Carey - Trisomy 13/18 The BasicsDr Carey explains the basics of how a trisomy occurs and the differences between full, partial and mosaic. From the SOFT 2020 Virtual Conference. https://www.youtube.com/watch?v=NcKdIq_g-FI Dr. John C. Carey Throughout his...
Video – Heartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18
Dr. Nicole Birge & Dr. Meaghann WeaverHeartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18. From the SOFT 2020 Virtual Conference. https://youtu.be/9tQIXg84jzY About Dr. Nicole Birge:Nicole Birge M.D. is the Medical...
Adapted Seating and Mobility
From the SOFT 2020 Virtual ConferenceMichael J. Workman PT C/NDT discusses Adapted Seating and Mobility. https://www.youtube.com/watch?v=_M6JpZ_U7QU About Michael J. Workman:Michael J. Workman PT C/NDT has been a physical therapist for the past 27 years with a primary...