Elijah Defying All of the Trisomy 18 Odds
March 17, 2023
March is Trisomy Awareness Month. March 18 is Trisomy 18 Awareness Day. It was chosen specifically because it represents 3 chromosomes on the 18th chromosome.
by Sarita Edwards
RARE Parent, Caregiver & Advocate
President & CEO, The E.WE Foundation
In 2016, my husband and I learned that we were pregnant with our fifth child. Around 22 weeks we were told that our unborn child has a rare disease named Edwards Syndrome, or Trisomy 18. We were told he would pass away in utero, during delivery, or shortly after birth. In March of 2017, our son, Elijah was born alive but we were told repeatedly to enjoy our time, he would probably pass away soon. We were sent home, post delivery, in hospice care, where Elijah stayed for the first 7 months of his life.
Trisomy 18 is a rare genetic condition caused by the presence of a third copy of all or part of chromosome 18. This causes abnormal development in many of the baby’s organs. There is no cure or treatment for Trisomy 18 and babies who survive birth usually die within their first month of life. Only five to 10% of babies born with Trisomy 18 will live past their first birthday but with severe disabilities. Elijah has Full or Complete Trisomy 18 which means the extra 18th chromosome is in every cell of his body.
In March of 2019 we started the Elijah Wayne Edwards or E.WE Foundation where I serve as CEO & President. Our mission is to raise awareness about Trisomy 18 and bridge the gap between receiving a rare life-limiting diagnosis and how the healthcare system chooses to respond. We facilitate resources and support for families impacted by Trisomy 18 and other rare diseases through our three core programs, LEAP, ZEBRA, and STRIPE.
- LEAP is our health literacy and community education program that focuses on improving health, financial advocacy, special education, and social service access for rare individuals, families, and communities. Our LEAP program is also accredited by the Alabama State Board of Social Work Examiners to provide continuing education credits.
- ZEBRA is our comfort care & end-of-life support program that addresses self care, mental health, and navigating a life-limiting diagnosis or medically complex outcome.
- STRIPE is our economic assistance program. Families experiencing financial hardship can request assistance directly from our website.
Learn more about the E.WE Foundation.
Today, Elijah is in Kindergarten. He will be 6 years old on March 28th. He has a list of medically complex issues and we see about 19 specialists, but he’s alive! Our hope is to heighten the awareness of Trisomy 18 and bridge the gap between diagnosis delivery and healthcare coordination.
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