Raising two children is hard enough at the best of times, but Malibu parents lifeguard Ryan, 43, and ER nurse Darlene Addison, 38, have an added challenge: their two-year-old daughter, Callie, suffers from epilepsy. She had her first seizure when she was nine months old. It lasted six minutes and Callie stopped breathing momentarily.
Since then, the Addisons’ main mission has been to keep Callie alive, but they also want to raise awareness about this life-threatening seizure disorder.
They’re keeping busy trying to do both.
On Friday, March 27, the family hosted an annual fundraiser for Callie’s Cause, a fundraising campaign that raises money for epilepsy research as well as off-setting some of Callie’s medical expenses, at Duke’s Malibu. Friends, family and supporters who want to help out Callie and the cause packed the Ocean Room from 6 p.m. to 10 p.m. Festivities for the evening included appetizers, a silent auction and live music by The Roman Helmets, who donate their time annually to play at the fundraiser.
The final figures for their latest fundraiser aren’t in yet, but the same silent auction, also at Duke’s in the name of Callie’s Cause, raised $56,000 last year for UCLA’s Pediatric Neurology Unit and epilepsy research. It’s hoped that the figure for this year’s fundraiser will at least be matched.
In-between seizures, life is pretty normal for Callie. She attends preschool and is a typical toddler. She’s developing normally and will go to a regular school. Her condition is the result of a gene mutation, so while the Addisons aren’t 100% sure of her prognosis, some children have been cured.
“It’s still too early in the game to know if that’s going to be Callie’s case,” Ryan said. “Right now we are trying to stay hopeful, strong and carry on with a normal life raising our two kids.”
Callie’s five-year-old brother, Bodie, is perfectly healthy.
Callie suffers seizures (known as status epilepticus) that last so long she is often hospitalized. Her mother stays with her in the hostpital for up to days at a time and her father stays as long as possible, but Bodie needs a parent, too.
Callie’s latest, and biggest, seizure was on Jan. 21. It lasted for one hour and 45 minutes and resulted in an overnight stay in the pediatric intensive care unit at UCLA Medical Center.
“It’s especially tough on Callie when she’s in hospital, as the drugs she’s given are Valium-based and she suffers withdrawal symptoms, like a typical drug addict would,” Ryan said.
The fundraising is primarily for research, but also to help with some personal expenses.
“We have insurance, but not all her medications are covered. The co-pays start to add up. Callie is also on a special and expensive diet,” Ryan explained.
This is called a ketogenic diet and it has made a big difference for Callie. It’s a high-fat, low-carbohydrate regimen with a little protein, and all her meals must be weighed meticulously.
The money raised at this year’s fundraiser for Callie’s Cause will again be donated to UCLA’s Pediatric Neurology Unit for epilepsy research, with the ketogenic diet as the main focus.
And March was a busy month for Ryan and Darlene. They were among 70 people who paddle-boarded from Palos Verdes to Catalina, slept on the island, completed the Catalina Marathon, spent another night there, then paddle-boarded home — all to raise awareness of epilepsy.
For more information or to donate to the cause, visit calliescause.org.
