Bob Jones student Rian Edwards recently took part in the Global Genes summit in San Diego to advocate on behalf of her brother who has a rare genetic disease.
Elijah Edwards, a kindergartner at Rainbow Elementary, has Edwards Syndrome, Trisonomy 18, caused by the presence of a third copy of all or part of chromosome 18 which can cause abnormal development in organs and a significantly shorter life expectancy.
Elijah's plight lead his parents, Kareem and Sarita Edwards, to establish the E.WE Foundation on behalf of their son.
In her talk to the global audience in San Diego, Rian shared how her brother's disease, with its demands and shorter life expectancy impacts her as a sibling. She spoke on a caregiver track entitled The Rare Siblings Experience and also met with key conference organizers and participants.
What a great experience for Rian and a meaningful talk for families with similar challenges with a loved one.
Rian Edwards. left; her mother Sarita Edwards, right; with three-time Olympic gold medalist Gail Devers (center), who is a rare disease patient.