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NICOLE’S STORY

Meet 12-year-old Nicole Seiler, whose glowing personality commands attention in any room she enters. This live wire of a preteen loves kindergartners, whom she babysits and leads in camps. She also loves butterflies and VW bugs, both adding spark to her life.

Nicole attends Temple Judea in Tarzana, where she’s planning the B’nai Mitzvah for her twin brother, Michael, and herself. She’s so organized that at only 12, she’s leading the event – attire, location, menu (mostly vegan because of her beliefs), and all the magic that will make this milestone one to cherish forever.

Her friends and classmates, who call her Nikki, enjoy her strong-willed and infectious character as they actively participate together in Girl Scouts, the Center Stage Dance in Sherman Oaks, camp JCA in Malibu, gymnastics and soccer at the AYSO of Sherman Oaks, among others. Friends also rally with her stance on anti-bullying.

Teachers admire Nicole because in addition to all of her activities, she makes time for one of her passions: reading while sipping on her favorite drink, Dr. Pepper. Her love for reading quickly expands to the Battle of the Books, a competition for who could read the most books. And because of her competitive nature, Nicole pleases her teachers during this competition at Holmes Middle School in Northridge. And her teachers laugh when Nicole remarks “imagine if cheesecakes could change the world.”

It’s Tuesday and she’s anxiously planning her B’nai Mitzvah . As she’s sitting in her green- and purple-colored room that she enjoys decorating, Nicole doesn’t feel so well. Her flu-like symptoms slow her typical lively pace. The doctor diagnoses her with a virus, but gives her a round of antibiotics just in case.

On Wednesday, Nicole is plagued by exacerbating symptoms, commenting that she “smells old people.” Everything tastes weird to her, but being good ol’ Nicole, she plows through the intensity.

Now it’s Thursday, where she’s on the couch trying her best to beat the virus. She goes into seizures, falling off the couch. Paramedics rush to the house to take her to the hospital. The seizures are unstoppable, her strong body succumbing to the brain’s constant convulsions.

It’s Friday and doctors diagnose her with encephalitis, swelling of the brain, cause unknown, which makes treatment more difficult. Her parents, twin brother Michael, sister Michelle, and rabbi are in shock as the horror unfolds, robbing Nicole of her of life, missing her upcoming B’nai Mitzvah, devastating the family.

Days later, 750 family, friends, teachers, coaches, teammates and children fill the room to honor the life of this well-loved girl who at only 12, impacted so many lives. Friends get tattoos to stamp the imprint of Nikki’s life on their arms, a lifelong reminder of their special bond.

In the seven years since she died  Suzanne Spector, Nicole’s mom, misses her every day, wondering what her life would have been like as she sees her daughter’s friends. “You never get over the loss of your own child,” she says.

As a kindergarten teacher, who enjoys yoga and running art and science camps, Suzanne honors Nicole’s life each year with a “Walk to Cure Encephalitis.” Her own class supports her with a lemonade stand on the day of the walk.

“I just wanted to do something to feel more positive about my loss,” Suzanne says humbly. The funds raised at these walks support Encephalitis411, an organization whose mission is improving the quality of life for those impacted by encephalitis. With Suzanne’s selfless support, she provided the seed money that has allowed this nonprofit to host support groups, conduct research, intervene during crisis, and field hotline calls.

Even Suzanne’s sister, Wendy Spector-Steinmetz, supports the cause through a children’s book called “The Rock Fairy,” using Nicole’s favorite green and purple colors on the book cover. A portion of the proceeds goes to support Encephalitis411.

For those in the area, come join the walk on November 11th, 2018 from 10 am to noon at Lake Balboa Park in Encino, California. For everyone else, you can organize a walk around your neighborhood. Grab some friends and join us to celebrate the life of Nicole and to support more research, advocacy and awareness for encephalitis, which impacts 20,000+ Americans each year.


Thank you, Suzanne, for your ongoing efforts to increase awareness and to support Encephalitis411 through your fundraising.
We honor the memory of your sweet daughter.