SAVANNAH, Ga. (WSAV) – When your baby is hurting, it’s only natural to want to hold her to make her feel better. But, what if that simple form of affection actually did the opposite? It caused terrible pain. That’s what happened to the Anne and Joe Davis in Savannah when their second daughter Hallie Grace was born. She had a rare genetic disorder called epidermolsys bullosa which is more commonly called EB. Children with EB are often referred to as Butterfly Babies because their skin is as fragile as a butterfly wing, easily torn with simple touches.

Sadly, Hallie Grace only survived for about three months. When we first met the Davis family, they were turning their grief into action and created the Heroes for Hallie Grace Foundation to help find a cure for EB.

Recently, the Davis family invited us back into their home for a very special development. Watch the story to see what the family has been keeping relatively private for several months.