RESOURCES
Parenting Resources
Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child. It has been continually updated as new information has become available and is the only known resource of its kind. The updated book is available here in English (click the cover), Spanish and Portuguese (click the links below). Please feel free to reproduce as many copies as desired (but don’t change any of the text).

COMING SOON: Room 119 — A Trisomy 13 Story of Love and Courage
Discover Room 119 — Michelle Stewart’s moving true story of baby Adaeze, a three-pound miracle who changed lives through her love and courage.
Living in the Moment with Bree: A Family’s Journey with Trisomy 13
Discover Bree’s story — a powerful short film about a family’s journey with Trisomy 13, shared by Holland Bloorview Kids Rehabilitation Hospital.
Honoring RJ’s Light: The Manley Family’s Tribute Shines Bright
On September 18, 2015, Kahle Giesen and RJ’s father welcomed their son, RJ Manley, into the world. Born with Trisomy 18, RJ lived for two precious days. Though his time was short, his life continues...
SOFT Conference 2025 Highlights | Indianapolis
SOFT Conference 2025 – Highlights from Indianapolis, Indiana We are excited to share the highlight video from the SOFT Conference 2025 in Indianapolis, Indiana! This year marked the 39th SOFT...
SOFTLY SPOKEN (Support Organization for Trisomy 18, 13, and Related Disorders)
SOFTLY SPOKEN: “FULL CIRCLE” By Kris Holladay Eleven years ago, I was on a flight from Phoenix to Salt Lake City. About the time we would be flying over the Grand Canyon, the pilot speaking from...
Trisomy Spotlight – Tabitha Grace
What is something unique and special about your child with trisomy that you wish more people knew? Believing that ALL children are a blessing from God, we were excited to welcome our sixth child. At...
When Love and Strength Lead the Way: A Trisomy 18 Story in The New York Times
Our hearts are full seeing Jacqueline and Noah's story in The New York Times! This beautiful family represents what we know to be true - every child's story matters, every family's love is powerful,...
American Academy of Pediatrics Issues Historic Guidance on Trisomy 13 and Trisomy 18 Care
FOR IMMEDIATE RELEASE: Landmark report states "no ethical justifications for universal, principle-based differential treatment" based solely on genetic diagnoses ROCHESTER, NY – July 23, 2025 –...






































