Our mission is to support families affected by Edwards Syndrome, Trisomy 18, while changing the medical perspective through efforts of advocacy, education, and public policy.
The E.WE Foundation was founded by Kareem & Sarita Edwards; parents to Elijah Wayne who was prenatally diagnosed with Edwards Syndrome commonly known as Trisomy 18, along with an extensive list of other medical complexities. The Edwards learned of Elijah’s diagnosis after a routine prenatal ultrasound revealed anomalies. They were referred to Maternal Fetal Medicine who confirmed the Trisomy 18 diagnosis.
Elijah’s Trisomy 18 diagnosis is medically defined as “incompatible with life” which gives leverage to many physicians to withhold medical resources. The poor quality of life stigma further supports the lack of specialty care services available to infants with Trisomy 18. Specifically for the Edwards, they were discharged, post-delivery, with hospice care for the first seven months of Elijah’s life. The Edwards learned that Elijah has Full Trisomy 18 when he was 9 months old.
The E.WE Foundation believes early access to diagnostic therapies can create better outcomes for chronically ill infants. For the Edwards, many of these therapies were delayed or denied due to the high mortality rate associated with Trisomy 18. Additionally, access to social services and rare disease management was not offered leading the Edwards to independently coordinate Elijah’s care. Today, they travel 2 hours one-way to access more than 17 specialists.
The E.WE Foundation is dedicated to ensuring patient populations have access to resources, health literacy and community education. We believe patients with chronic illnesses should have immediate access to quality healthcare and medical resources, without prejudice.
The E.WE Foundation was established to bring awareness to Trisomy 18. Our mission is to support families affected by Trisomy 18 while changing the medical perspective through efforts of advocacy, education, and public policy.