Local Family Makes Waves For Toddler Suffering From Epilepsy

MALIBU (CBSLA.com) — A local family is making waves for their 2-year-old daughter who suffers from an unpredictable condition.

Born healthy as the second child to Ryan, a Los Angeles County lifeguard, and registered nurse Darlene, Callie appeared to complete the Addison family's wonderful life on the shore in Malibu.

"The minute she wakes up, she is on the run, and she's always happy," Darlene said of her free-spirited toddler.

But life hasn't been all fun and games. Ryan and Darlene recently spoke to CBS2's Kristine Lazar.

They told her about the time Callie when was just 9 months old, woke up from a nap, and Ryan immediately knew something was wrong and yelled for his wife.

"And when I ran in, she had fallen back down into the crib, and she was shaking," Darlene recalled.

Callie was having a seizure, which caused her to stop breathing.

"Her lips were blue, she was a gray-ashy color," Ryan said. "She looked like she was dying."

By the time paramedics arrived, Callie's seizure had stopped. But just six weeks later, she had another ... and another six weeks after that.

"I get so emotional, I'm sorry," Darlene said, choking back tears. "She's just really tough. She's been through so much, and she's just a fighter."

Eventually, doctors at UCLA Medical Center diagnosed Callie with epilepsy.

"An epileptic seizure occurs when a large number of neurons fire at the same time," says Raman Sankar, Callie's pediatric neurologist.

Callie's condition has been characterized by unusually long seizures. The longest one yet took place in December, when she seized for an hour and 45 minutes. She had to be airlifted to UCLA Medical Center in Westwood, where her mother works.

"I was just crying over her, saying 'Please stop, please stop seizing. Please wake up, Callie. Please!'" Darlene said.

When Callie did wake up, she made a full recovery. But her parents realize that may not always be the case.

"Cause that's the fear, every time. You just never know," Darlene explained.

Hot weather or a high temperature seem to be triggers for Callie's seizures.

"I cry every day, obviously. It's just really hard," her mom said.

To channel their grief, the Addisons started the nonprofit Callie's Cause to raise money for epilepsy research at UCLA.

The nontypical fundraiser includes an annual paddle-out to Catalina Island, a trip of 22 miles, each way.

"I hope everyone thinks about it when they start getting tired or start to hurt. I'm like, 'Well, at least you aren't having a seizure,'" Ryan said.

In 2014, Callie's Cause raised $56,000 for UCLA's pediatric neurology department. Sankar says their donation means so much more than dollar signs.

"There is the stuff it pays for, and then there's an enormous emotional boost for us who toil hard," he said.

The Addisons admit fundraising gives them a boost, too, and they hope their efforts will do the same for their daughter.

"I want her to know that her parents really cared about her every step of the way," Ryan said.