July 2025 - Hallie Grace Davis' Story

This month, we are honored to share the story of Hallie Grace Davis: a brave and beautiful baby girl. Hallie Grace was unexpectedly born with Junctional Epidermolysis Bullosa (JEB), which stole her life at only 3 months old. JEB is an autosomal recessive disorder that occurs in less than 5% of EB cases.

On June 5, 2021, Hallie Grace Davis came into the world — a beautiful answer to a prayer, and a soul destined to make an impact. Just three short months later, she left this world, but not without changing the hearts of everyone who met her, heard her story, or came to love her from afar.

Hallie Grace was unexpectedly born with Junctional Epidermolysis Bullosa (JEB), an extremely rare and severe form of EB — a genetic skin condition often called “the worst disease you’ve never heard of.” JEB affects less than 5% of those with EB and causes fragile skin to blister and tear with the slightest friction. The severe subtype is especially devastating, often leading to death within the first 6 to 24 months of life.

Hallie’s condition required round-the-clock care: dressing changes took hours, and something as simple as a diaper change could take nearly an hour. Despite the challenges, Hallie radiated warmth and drew others to her. From the start, her family knew she was a warrior — a testimony to God’s strength and grace — though they never imagined how brief her battle would be. Hallie’s purpose, as it turns out, was powerful: to help bring awareness to EB and fuel the fight for a cure.

Hallie was born into a home full of love, laughter, and even five rescue cats. Her big sister Brielle — just two years old — welcomed her with open arms and a handmade sign, always bringing her toys and books, and covering her with sweet forehead kisses. Though too young to fully understand EB, Brielle’s gentleness showed a bond beyond words. And after Hallie passed, the family received another unexpected gift: a baby brother named Evan — hand-picked, they believe, by his angel sister in Heaven.

Though life may now be quieter and logistically “easier,” the absence of Hallie is felt in every corner of the home. But her family chooses to carry her spirit forward — honoring her, advocating for others with EB, and living each day with her in their hearts. They proudly call themselves a family of five — Brielle, Evan, and their angel Hallie Grace — and they are committed to turning their grief into purpose.

Hallie may have only spent three months on this earth, but her legacy will last lifetimes. Join us in honoring her by spreading awareness of EB, supporting families affected by it, and pushing forward toward the cure Hallie deserves.

You can honor Hallie Grace by spreading awareness about EB, donating to EB research, or simply sharing their story with your friends and family.

Purchase a Hallie Grace shirt to show your support and share her story:

Donate in Hallie Grace’s Memory: https://hallieflies.com/donate/

Thank you for reading Hallie Grace’s story and being a part of our mission to raise awareness, inspire hope, and work toward a cure for EB.