BLOGS
Charlotte Whitaker – Trisomy 13
Charlotte’s Journey: A Warrior Princess’s Fight Against All Odds Our journey with Charlotte began long before she was born. At 27 weeks, we received the results of a Non-Invasive Prenatal Test (NIPT), which indicated a high risk for Trisomy 13, also known as...
Keila S – Trisomy 13
Keila’s Journey: Embracing Life with Trisomy 13 Keila is an extraordinary young woman who was diagnosed with Trisomy 13 during infancy. While I suspect she has the mosaic form of the condition, much of her medical history remains unclear to me. Keila is my...
Isabel De Mingo Del Pueyo – Trisomy 13
Isabel’s Story: A Journey of Resilience and Joy Our journey with Isabel began with a life-changing diagnosis during the 22nd week of pregnancy: full Trisomy 13. The medical advice we received was devastating—interrupt the pregnancy because she likely wouldn’t...
Bud-William Muse – Partial Trisomy 13 and 17
Celebrating Bud: A Specially-Abled Blessing On January 20, 1993, my son, William "Bud" H. Muse, was born with a rare chromosome abnormality: Partial Trisomy 13 and 17 (long arm 13 and short arm 17). His condition is so rare that he is the only known case in the...
Daniela Viviana Rodriguez – Trisomy 18
A Mother’s Love: Remembering Daniela Viviana In 2023, I was blessed to conceive naturally at 45 years old with my eighth child. It was a miraculous experience, coming 30 years after I first became a mother in 1993. My pregnancy was fantastic, filled with...
2024 SOFT Conference Workshop: Cardiac Surgery In Infants with Trisomy 18 and 13
This workshop was presented at the 2024 SOFT Conference in Minneapolis, MN on July 12, 2024.Please note that the Doctor Q&A is also included on this video.
Perspectives on the Care and Management of Children with Trisomy 13 & 18 Syndromes
Perspectives on the Care and Management of Children with Trisomy 13 & 18 Syndromes. Presentation occured at the Grand Rounds on July 12, 2024 in Saint Paul, Minnesota.
The SOFT Nominating Committee Is Pleased To Announce
Hello SOFT Membership – We are excited for the annual SOFT Conference this summer in Bloomington MN, July 10-14, 2024. The Nominating Committee is pleased to announce the opportunity to consider joining the SOFT Board of Directors. There is one director seat available...
Pediatric study opportunity for Trisomy 18/13
University of California San Diego (UCSD) Pediatrics Study Opportunity WHAT: Investigators at UCSD are interested in learning more about parents views and experiences of the medical care provided to their children with trisomy 18 or 13. Specifically, we are interested...
Trisomy Awareness Month Proclamations 2023
2023 Trisomy Awareness Month Begins March 1st! As of March 1, 2023, SOFT has received 2023 Trisomy Awareness Month Proclamations from XX states. Although March has been declared and recognized as Trisomy Awareness Month for over 10 years it has taken some time to get...