Parents push for aneurysm awareness after Apex teen's sudden death

“She just kind of leaned forward and put her hand on her forehead and said, ‘Dad!’ and then she rolled forward on her bed and just laid there,” said her father, Todd Helton.

Ellie had suffered a brain aneurysm. Doctors determined there was too much brain damage, telling the family “the essence of her is gone,” her mother, Karen Helton, recalled.

Now, a year later, Ellie’s parents are trying to channel the grief over their daughter’s death into action to save others.

When Ellie began getting headaches, doctors chalked her pain up to ocular migraines, her parents said. But the plum-sized aneurysm that had been sitting on her brain stem since birth wasn’t on anyone’s radar.

The Heltons are among a small core group of activists leading a nationwide charge to raise money and awareness for brain aneurysm research “so people know what it is that happened and what we’re dealing with and what they need to look out for,” said Todd Helton.

The Heltons said they have met with representatives from North Carolina's congressional delegation who say they're working to earmark funding for research and awareness in Ellie's name.

The annual rate of rupture is approximately 8 to 10 per 100,000 people. Ruptured brain aneurysms are fatal in about 40 percent of cases. Of those who survive, about 66 percent suffer some permanent neurological deficit, according to BAF.