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 (The Edwards); parents to Elijah Wayne, prenatally diagnosed with 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 enables a lack of specialty care services available to infants with Trisomy 18. Specifically for The Edwards, they were discharged, post-delivery, with hospice care only for the first six months of Elijah’s life. Elijah was 9 months old when the Edwards learned that of the three types, Elijah has Full Trisomy 18.
The E.WE Foundation believes that 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 available which led The Edwards to independently coordinate Elijah’s care. The Edwards travel 2 hours one-way to access more than 14 specialists.
The E.WE Foundation supports health literacy, community education, patient advocacy and public policy. The Edwards are dedicated to ensuring that patients with chronic illnesses 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.