Producer Dee Daniels welcomes listeners back to the Grace, Grief and Grit podcast with guests Anne and Joe Davis to reintroduce Hallie Grace’s story, share updates in the Epidermolysis Bullosa (EB) community, and preview this year’s Butterfly Ball.

Anne and Joe recount Hallie Grace’s birth on June 5, 2021, her early mild symptoms, and her diagnosis after genetic testing of severe junctional Epidermolysis Bullosa. They describe the realities of EB care—painful skin breakdown from friction and heat, lengthy diaper changes with special supplies, and frequent full-body bandage changes—along with Hallie’s beautiful personality, early milestones, and their deep connection with her.

Anne explains how they chose to “parent Hallie still” by founding the nonprofit Heroes for Hallie Grace (officially formed March 2022) to raise awareness, support families, and fund research toward treatments and an eventual cure. They outline key initiatives including Wings of Care (helping EB families with individualized needs like equipment and home items), personalized memorial boxes for families who have lost a loved one, and butterfly bundle welcome boxes for newly diagnosed babies and their families. They also discuss ongoing advocacy and connection work with EB organizations, researchers, doctors, and pharmaceutical companies, and Anne’s focus on mental health support as a trauma-specialized clinical psychologist.

The episode highlights the annual Butterfly Ball—held the first Friday in June—as a joyful community-building fundraiser featuring food, music, silent auction, and a butterfly release. This year marks the 5th annual event on June 5 (Hallie’s birthday and “golden birthday” year), themed “Somewhere Over the Rainbow,” inspired by a triple rainbow that appeared during last year’s butterfly release. Tickets are on sale now!

IMPORTANT LINKS:

Butterfly Warrior: The Story of Hallie Grace Documentary || Watch Now

A Beautiful Soul Who Left an Impact

Learn more about ways you can help and join the fight

Grab your TICKETS here for the 5th Annual Hallie Grace Memorial Butterfly Ball

FIND A FAVORITE SPOT IN THIS EPISODE:

00:00 Podcast Return and Updates

01:52 Hallie Grace Birth and Early Signs

04:04 EB Diagnosis and Daily Care

06:20 Hallie Personality and Bond

12:05 Medical Escalation and Loss

16:32 Finding Purpose After Grief

20:52 Nonprofit Support and Wings of Care

24:30 Memorial Boxes and Lasting Love

26:54 Memorial Boxes Purpose

27:28 Butterfly Bundle Welcome

28:04 Funding EB Treatments

29:42 Awareness Events Films

31:24 How to Donate Directly

33:22 Building Community Connections

34:43 Education Patient Advocacy

37:11 Mental Health Support

39:51 Butterfly Ball Origins

43:06 Rainbow Theme Golden

46:01 Tickets Top Hats

49:58 Savannah Travel Wrap

50:40 Final Links