ATLANTA -- A fundraiser will be held Thursday night for a 2-year-old Atlanta girl who has a genetic condition so rare, most doctors have only heard about it.

The condition is so bad for Ellie Tavani that even hugs from her parents cause excruciating pain.

The condition is called epidermolysis bullosa, which causes severe blistering at even the lightest touch, doctors said.

To make things worse, doctors said there is no treatment or cure for Ellie’s condition.

Her parents, Andrew and Shawn Tavani, are trying hard to give Ellie a normal life, but a look at her hands shows that she is different.

Ellie has no fingernails and skin that looks as if it's been burned and blistered.

“So, basically, she's missing a protein that causes the skin to adhere to itself,” Andrew Tavani said.

Any friction at all makes Ellie’s skin separate and blister. Basically, Ellie will have to be treated like a burn victim for the rest of her life.

“At night, when we do bandage changes, that's when it hits you,” Tavani said.

Instead of a drawer full of toys, Ellie has a drawer full of gauze and bandages.

“Her bandages cost about $5,000 a month,” Tavani said.

Tavani said it helps that Ellie's mom is a nurse.

The thousands of dollars the Tavanis spend on bandaging is not covered by insurance.

So the Park Tavern in downtown Atlanta will hold a fundraiser for the Tavanis Thursday at 6:30 p.m.

The event will try to raise $40,000 for research, treatment and a cure.