“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 chosen long before we knew…

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“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 confirmed over the next week that our…

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“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…

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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 early. When she was born,…

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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 Protection, and removing triggers around the house will decrease seizure activity.  About Dr. Steven Cantrell:Dr. Steven Cantrell…

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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. About Dr. Stephen Braddock:Dr. Stephen Braddock provides genetic evaluations, diagnoses, and counseling for patients of all ages. This includes services not exclusive to…

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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. About Laura Lindroth:Laura Lindroth is Director of Programming and Community Engagement at Rainbows for All Children, committed to expanding the number of peer support groups, adapting an equitable training and…

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Dr. John Carey – Trisomy 13/18 The Basics Dr Carey explains the basics of how a trisomy occurs and the differences between full, partial and mosaic. From the SOFT 2020 Virtual Conference. Dr. John C. Carey Throughout his career, Dr. Carey has been interested in birth defect syndromes and the care of children with these…

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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. About Dr. Nicole Birge:Nicole Birge M.D. is the Medical Director of the Neonatal Intensive Care Unit at Children’s Hospital and Medical Center Omaha.Children’s NICU is unique…

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