Welcome to the Edwards Syndrome Association! We are here to bring awareness, help advocate, and support Edwards Syndrome/Trisomy 18 Syndrome families. We have a support group on Facebook for Parents/Caregivers that you can join to discuss your concerns and connect with others in the community!
What is Trisomy 18?
Trisomy 18, a genetic condition known as Edwards Syndrome, occurs when a person has three copies of chromosome 18 instead of the usual two copies. This extra genetic material can cause various physical and intellectual challenges. While the symptoms and severity vary from individual to individual, common features of trisomy 18 include a small head, low birth weight, clenched fists with overlapping fingers, and various structural abnormalities of the heart, kidneys, and other organs. Children with trisomy 18 have a chance to live longer enriched lives with the appropriate medical care and support. It is important to seek timely and accurate diagnosis and care of trisomy 18 to help maximize the quality of life for individuals and their families affected by this condition. There are several types of Trisomy 18 which are explained further here…
Thriving Thursday
NICU GIFTS
We are thrilled to share with you an incredible program that has been making a huge impact on the lives of newborns and their families! We understand the difficulties and stress that come with having a baby in the Neonatal Intensive Care Unit (NICU). But with our NICU Gifts program, we strive to provide comfort and joy to families during these tough times. We take the time to carefully select beautiful gifts that are sent to newborns as they begin their road to recovery. It is our way of showing these families that they are not alone in their journey. So, if you or someone you know has a baby in the NICU, we encourage you to sign up for our NICU Gifts program and receive the NICU Care Package. Let us spread kindness and hope during this challenging time by clicking the “NICU Gift” button on our website.
Outreach Programs
CARDS OF HOPE
Our “Cards of Hope” program is here to make a positive impact on children with Trisomy 18/Edwards Syndrome who are currently inpatients within the hospital. We believe that love and positivity can do wonders, especially for these special children who are going through a tough time. As part of our program, we provide a small care package for them, which includes thoughtful items that can brighten their day. Moreover, we provide an easy-to-use form for sending personalized and heartwarming cards, so that you can join us in this effort to spread love and positivity. Simply click the “Cards of Hope” button and access the form to send your message of support to the children who need it the most. Your small gesture can make a huge difference in their lives!
Precious Angels
Skylar lived a beautiful 3 months and was a Full Edwards’ Syndrome Warrior. She was born on December 6, 2022, and eternally healed on March 1, 2023.
In the words of her family, “Skylar was our little miracle, with all the odds against her she lived three beautiful months! Skylar taught us to count every blessing no matter how small it may seem. We love and Miss Skylar so much.”
Skylar is a part of the legacy of Breaking Barriers for Edwards’ Syndrome here on Earth, and now her light shines brightly from Heaven. We know she will continue to shine down on her family, friends, and Trisomy 18 brothers and sisters.
Explore Resources
Explore Resources
Our Goals >
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Informational Resources >
Do you have a resource that can help our community?
We are alway seeking out useful resources to support and educate ourselves and our community. If you have a resource you believe could help The Edwards’ Syndrome Association (ESA) Community please let us know about it.
Compatible With......
Eleanor Jane has Trisomy 18/Edwards Syndrome and is modeling for a Fashion Kids Magazine
