BLOGS
SOFT Member Spotlight – Brittany Diaz
A Journey of Love and Strength: Brittany Diaz and Everlii Raine Joy Introduction Parenthood is a journey of hope, dreams, and unexpected turns. For Brittany Diaz, this journey took a path she never anticipated when she learned of her daughter’s diagnosis. This is...
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...






































