SAVANNAH, Ga (WSAV) – When you have a baby who is hurting, it’s only natural to want to hold her to comfort her. But what if that type of affection would actually cause your baby more pain? That’s just part of the nightmare that the Davis family of Savannah was faced with after their second baby girl, Hallie Grace was born.

Hallie Grace was born with a rare genetic disorder called Epidermolysis Bullosa, most commonly referred to as EB. Children who are born with this are also called Butterfly Babies because their skin is as fragile as a butterfly wing.

We caught up with Davis family to learn more about this illness and their efforts to make sure that no other family has to deal with this terrible condition. They started a foundation to raise awareness and funding to find a cure. On June 10th from 6-10pm at the Savannah Station they are hosting the Hallie Grace Memorial Butterfly Ball for EB. 100 % of the proceeds go to fighting EB. For tickets just go to EVENTBRITE. You can follow them on Facebook too.

Here is the story of the Davis family and their sweet baby girl, Hallie Grace.