4 days ago
Fourth annual Hallie Grace Memorial Butterfly Ball for EB
SAVANNAH, Ga. (WSAV) — Epidermalysis Bullosa, also known as EB, is a rare genetic condition that affects one in every 20,000 births.
Babies diagnosed with this condition usually don't live long lives, and they are often referred to as butterfly babies because their skin is as fragile as a butterfly's wings.
Turning grief into triumph is how one family, whose child was diagnosed with a rare genetic skin condition, is honoring her life and legacy.
'To be a lost parent is the worst thing in the world. And I would give anything to make sure nobody else has to ever go through that again,' said mother of Hallie Grace and Executive Director of Heroes for Hallie Grace, INC Anne Davis.
It's the fourth annual Hallie Grace Memorial Butterfly Ball for EB. Mom of Hallie Grace Anne Davis, who passed away when she was only three months old from the genetic skin condition, said events like these are important to spread awareness because many don't know what EB is or how it affects families dealing with it.
'When you lose a child, the one thing you want more than anything is for them to be remembered and to know that their life mattered,' Davis said. 'So, our biggest mission, is that we raise awareness, we raise funding all that. But our biggest thing is connecting with the families, making sure that those families know that those children still matter, whether or not they're still here.'
The painful skin condition is caused by a missing protein that holds the skin together, so with any sort of touch or heat, it can blister the skin and cause it to fall off. Davis said when doctors told her there was nothing they could do; she made it a goal to make sure another family would never have to experience the pain that they felt that day.
'When we get to know these families and we get to see these families go through this and we know what the diagnosis is, it's like watching a Mack truck going to hit someone and not being able to stop it, and so our goal with everything that we do is to stop it,' Davis said.
In the three years that Davis and her family have been advocating, there have been medical breakthroughs, now she said they are just waiting for a cure.
'I remember thinking, how do we have nothing,' Davis said. 'Since that time, so in just over a couple of years, we have three approved treatments for EB, two of which could actually work for Hallie's type, depending. But we're getting there. I mean, we're making huge, incredible strides. The FDA has approved these things, so now people don't have to hear there's nothing we can do.'
There are only a few tickets left for tonight's ball. If you're interested in purchasing those or just learning more about EB and the heroes for Hallie Grace organization, you can click or tap here.
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