Heroes for Hallie Grace Inc.

About

Hallie Grace's story began in June 2021 when she was born with a rare and severe genetic condition known as Junctional Epidermolysis Bullosa (JEB), a form of Epidermolysis Bullosa. She was diagnosed shortly after birth and, despite extensive care from specialized pediatric medical teams, passed away in September 2021 at just 3 months and 3 days old.

Epidermolysis Bullosa is a rare inherited disorder that affects approximately 1 in 20,000 births in the United States. It causes the skin and sometimes internal tissues to be extremely fragile, leading to painful blistering and injury from even minor friction or trauma. There is currently no cure, and treatment focuses on wound care, infection prevention, and pain management.

Hallie Grace's specific diagnosis, JEB, is an autosomal recessive form of EB affecting the skin's basement membrane zone. Her condition was classified as a severe subtype associated with early lethality, caused by mutations in the LAMB3 gene.

Her family continues to honor her life and legacy by raising awareness of EB and advocating for research toward a cure. Hallie Grace's story is shared in hope, remembrance, and determination to help other families facing this disease in the future.