Sisterhood of Angel Mama’s Magazine | Bereaved Mother’s Day Edition
Hallie Grace, Tiny Butterfly Warrior Angel
Written and Photos by Anne Davis
Hallie Grace Davis was born June 5, 2021 in Savannah, GA. After a very healthy pregnancy, shockingly, Hallie was born with a horrible, rare genetic disorder called Epidermolysis Bullosa (EB). After genetic testing, it was determined Hallie also had the rarest type of EB – Junctional (JEB) – and one of her two genetic mutations had never been documented before. She is literally completely unique.
Epidermolysis Bullosa (EB) is quite literally “the worst disease you’ve never heard of” and we need to change that to help find a cure! It is a rare but cruel genetic disorder caused by single mutations (errors) in the genetic code. There are multiple types and subtypes, which all vary in severity and symptoms, but the common denominator is that the DNA code does not produce a necessary protein to hold the layers of skin together. Children with EB are known as Butterfly Children because their skin is fragile like a butterfly’s wings and will blister or tear with any friction or trauma,
often leading to the equivalent of 2nd and 3rd degree burns. EB is debilitating and painful. As a parent, you are often only able to hold your baby in certain ways for fear of damaging their skin. Diaper changes took us up to an hour. Wound dressings must be changed often to prevent infection and took hours at a time. EB can impact the internal mucus membranes, including the airway and GI tract. And sadly, as in Hallie’s case, EB often shortens life spans or is fatal and robs families of their infants and children…
Hallie Grace spent one week in two separate NICUs before she was able to come home with her Mom Anne, Dad Joe, Big Sister Brielle, and her rescue cats. Hallie was followed by three of the top medical teams in the country and spent most of her time at home surrounded in love. She captured the hearts of thousands (friends, family, and even people from across the world online). She had wise eyes that drew everyone to her and she taught us all so much about love, compassion, forgiveness, acceptance, and the list goes on. She was truly a Borrowed Angel and embodied the term Warrior. Unfortunately, her type of EB is terminal and her tiny body could not keep up, so she flew Home to Jesus on September 8, 2021 at only 3 months, 3 days old. Her family is shattered but their mission is now to build her legacy and cure EB in memory of Hallie Grace and all the butterflies. Her family is in process of creating a nonprofit organization in her name.