Support for Families Facing Trisomy 18

Every Child’s Life Has Meaning

Jeanna and Robert holding Mia with Trisomy 18

Families Facing Trisomy 18 Often Feel Alone

Many are told there are no options. Many are not connected to other parents. Many struggle to access updated medical information. 

ESA exists so no family has to navigate this diagnosis alone.

Together, We Walk This Journey

The Edwards Syndrome Association is a national nonprofit supporting families affected by Trisomy 18 (Edwards Syndrome).

We provide:

  • Family connection and peer support

  • NICU and hospital outreach programs

  • Evidence-based educational resources

  • Advocacy grounded in updated medical research

  • Remembrance and celebration programs

We’ve honored 40+ Precious Angels and celebrated 80+ Thriving Warriors, helping families feel seen, supported, and empowered.

Brookie who has Trisomy 18 with mommy and daddy
Gunnar who has Trisomy 18 at Kindergarten graduation

Compassion Backed by Evidence

Recent guidance from the American Academy of Pediatrics affirms what families have long known — children with Trisomy 18 deserve individualized, thoughtful medical care.

ESA advocates for:

✔ Fair evaluation of heart surgeries
✔ Individualized care plans
✔ Evidence-based decision-making
✔ Access to interventions when appropriate
✔ Respect for the inherent value of every child

An extra chromosome should never determine the worth of a life.

Trisomy 18 Infant in pink clothing, relaxed position.

🔔 NEWS ALERT

Stay informed about the latest research, medical guidance, and advocacy efforts impacting families affected by Trisomy 18.

Featured Update:

American Academy of Pediatrics Releases Updated Guidance on Trisomy 18 Care

New recommendations emphasize individualized treatment decisions, fair evaluation of interventions, and evidence-based medical care.

Read the Full Article —>

Virtual 3.18k Proudly Sponsored By

Join Us for the Virtual 3.18k!

Walk, run, or roll anywhere and be part of the Edwards Syndrome Association’s mission to break barriers and bring hope. 

We would love your Sponsorship! Your Sponsorship helps fund care packages, family support, and vital hospital resources while giving your business valuable visibility.

Programs That Make A Difference

Precious Angels

Honoring the beautiful lives of children who are forever loved and never forgotten. Our Precious Angels Gift Program offers families a meaningful remembrance to celebrate their child’s life and legacy with compassion and care.

Gifts for the Trisomy 18 NICU packages

During tough times, our NICU Package program brings comfort and inspiration to families with newborns in Neonatal Intensive Care Units (NICUs). Join our program and receive our NICU Care Package to spread kindness and hope. Submit a request via the button for your special package!

Hospital Poster Edwards Syndrome/Trisomy 18

Our "Breaking Barriers" Hospital Display is designed to raise awareness about children with Edwards Syndrome (Trisomy 18) during their hospital stay. This poster is meant to help brighten your child’s day and share a message of hope with the medical team caring for them.

Trisomy 18 - 1st Birthday Gift

The ESA wanted to celebrate Edwards Syndrome warriors on their first birthday. This is the age that so many in the medical field say those with an extra 18th chromosome will not see. This makes this birthday so much more special for these kiddos.

Thriving Warriors & Precious Angels

Every child’s story carries strength. Through shared journeys, we honor resilience, celebrate milestones, and remember lives that changed the world.

Feature Your Warrior