Family celebrates daughter’s 5th birthday with fundraiser for rare genetic condition

SAVANNAH, Ga. (WTOC) - A Savannah family celebrated what would have been their daughter’s fifth birthday with an annual fundraiser that has raised more than $200,000 for research and families affected by a rare genetic condition.

Hallie Grace Davis was born with epidermolysis bullosa, or EB, a genetic condition that affects proteins necessary to bond layers of skin together and can be very painful. She died at three months old.

Six months after her passing, her parents created Heroes for Hallie Grace, a nonprofit organization that raises awareness for EB and supports affected families.

“To watch people celebrate our daughter, who only lived three months, is the one thing our heart needs more than anything else,” said Anne Davis, Hallie Grace’s mother.

Fundraiser supports research, families

The Butterfly Ball served as both a celebration and fundraiser, featuring a butterfly release, dinner, raffles and a silent auction. The family hoped to raise $50,000 from the event.

Money raised goes to funding EB research and assisting families throughout their EB journey.

“We donate a lot to these larger organizations but then we also help the community with welcome boxes for new babies, memorial boxes when people pass away,” Davis said.

The event drew family, friends, others affected by EB and members of Hallie Grace’s care team.

“She was the type of baby that, I knew she wanted to be generous and give anyone the shirt off her back, and so we wanted to help her community the best way we possibly could,” Davis said.

Progress in EB treatment

Dr. Lara Winelee, a pediatric dermatologist who treated Hallie Grace, said the family’s advocacy has made an impact.

“They have led, not just to an increase in research funding, but just that interest, and I think as soon as you get involved in working with EB it just becomes your life’s work in some way,” Winelee said.

In the years since Hallie Grace’s passing, there have been major steps forward in EB care. Three FDA-approved treatments are now available for children with EB.

Davis said she thinks a cure will be found in her lifetime.

“To do it around her birthday is just a way of letting the world know that we are forever grateful that she was born regardless of what happened,” Davis said.