BLOGS
SOFT Member Spotlight – Barbara Llanos
A Journey of Love and Strength: Barbara Llanos and Addesa Vasquez’s Trisomy 18 Story Introduction When Barbara Llanos first heard the words Trisomy 18, her world changed forever. The journey of parenting a child with a rare genetic condition is filled with...
SOFT Member Spotlight – Luz Amalia Veloz Gonzalez
A Mother's Journey of Hope and Resilience: Luz Amalia Veloz Gonzalez and Mia Ariely Juárez Velo Introduction Luz Amalia Veloz Gonzalez's world was turned upside down when she received the news that her daughter, Mia Ariely Juárez Veloz, had been diagnosed...
SOFT Member Spotlight – Lilianna Wiebe
A Parent’s Journey: Lilianna Wiebe and Alyosha Nicodemus Introduction The journey of parenthood is often unpredictable, filled with joys, challenges, and moments of profound reflection. For Lilianna Wiebe and her husband, the path took an unexpected turn when they...
SOFT Member Spotlight – Nicole Whitaker
The Strength of a Mother: A Journey Through Trisomy 13 Introduction Receiving an unexpected medical diagnosis for a child is one of the most life-altering experiences a parent can face. The emotions range from fear and uncertainty to unwavering love and...
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...