A Suffolk family is spreading awareness of a rare and undetected brain condition that claimed the life of their 6-year-old daughter.

On Jan. 8, 2018, Gina Keely says the school nurse called to tell her that her daughter, Paige, was crying about a bad headache. By the time she arrived at the school, Paige was having seizures and was unresponsive.

“A few short hours after trying to bring her back, she did not survive,” Keely told News 12.

Paige suffered from AVM, or arteriovenous malformation. Doctors describe it as a tangle of abnormal blood vessels connecting arteries and veins to the brain, which can rupture. 

Keely, of Nissequogue, established a foundation in Paige's memory.  She is aiming to raise awareness, promote medical screenings and is pushing for more training for emergency responders. When it comes to AVM, she says every single second counts.   

“She was beautiful. She was perfect. I’d give anything in the world to have her back,” says Keely.

The foundation is partnering with Dr. Kimon Bekelis, of the Stroke and Brain Aneurysm Center.

“The most important subtle findings have to do with these crushing headaches, dizziness, loss of balance, nausea, vomiting,” said the doctor. “If those are persistent, I would definitely pursue further investigation.”

Screenings include an interview, physical exam and if needed an MRA, which is similar to an MRI.

October is AVM Awareness Month.