Partial
Alistair (Partial) 7 years old
Meet Alistair! This incredible 7-year-old with Partial Trisomy 18 is a true warrior. His family shares, ‘Alistair always gives his
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.
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.
🔔 NEWS ALERT
Our President & Director of Finance’s little girl, Mia Mae, is opening doors for Trisomy 18 at one of the Top-Rated Hospitals, Ann & Robert H. Lurie Children’s Hospital of Chicago. She has been featured in an article – Mia’s Story: A Little Warrior With Big Impact – Living with Trisomy 18 (Edwards Syndrome). Check her out!!
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.
Support Starts Here
You don’t have to navigate this alone. ESA provides trusted resources, compassionate guidance, and a community that understands what you’re going through
Programs That Make A Difference
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.
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!
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.
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
Mosaic
Paislee Grace (Mosaic) 1 year old
Paislee Grace is a vibrant one-year-old with Mosaic Trisomy 18! Her family proudly shares, ‘Paislee Grace is here to show
