Nicole's Challenge: The Walk to Cure Encephalitis

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Nicole Seiler was a gregarious, fiercely independent 12-year old in 2010.  At Holmes Middle School in Northridge, she had lots of friends who joked that you rarely saw Nicole --- Nikki they called her ---without a Dr. Pepper in her hand.  And the teachers love her too…she was participating in a book reading challenge that year in school, Battle of the Books, trying to read more books than her classmates in a friendly competition.  

Nicole was involved in many of the same activities that her peers were such as Girl Scouts, gymnastics and dance at Center State and soccer at the AYSO of Sherman Oaks.  But unlike many her age, Nicole also took on more mature responsibilities, such as babysitting and leading kindergartners in camp JCA in Malibu.  She even volunteered…or rather, insisted on doing all the planning and coordination for the B’nai Mitzvah for her twin brother Michael and herself...a pretty big party to plan for someone of any age.  But she’s undaunted in working out every last detail from attire to location, menu, and all the magic that will make these twins’ milestone one to cherish forever.

So it’s a Tuesday and Nicole is anxiously planning the B’nai Mitzva.  But as she’s sitting in her green- and purple-colored room that she enjoyed decorating, this little girl doesn’t feel so well. Her flu-like symptoms slow down her typical lively pace. A doctor diagnoses her with a virus but gives her a round of antibiotics just in case.  On Wednesday, Nicole is feeling no better but stubbornly plows through the symptoms.

But now it’s Thursday, and Nikki is on the couch trying her best to beat the virus. Suddenly, she goes into seizures, rolling off the couch. Paramedics rush her to the hospital. The seizures are unstoppable, her strong body unable to fight off whatever it is that has gripped her brain.

On Friday doctors diagnose her with encephalitis --- swelling of the brain.  The cause is 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, devastating the family.  And just days later, in the company of 750 family, friends, teachers, coaches, teammates and children, they gather to honor the life of this well-loved girl who at only 12, impacted so many lives.

If you’ve never heard of encephalitis, it is inflammation of the brain that results in a brain injury due to swelling.  The effects are similar to stroke, concussion and traumatic brain injury. In most cases its effects are permanent and lifelong.  Roughly 20,000 Americans are impacted by encephalitis annually.   What makes it dissimilar to other brain injuries is that there are no predictive factors.  Encephalitis can unexpectedly strike anyone, anytime, anywhere, at any age, and in about 20% of the cases, the results are death.  

Maybe you’ve heard of Eastern Equine Encephalitis (EEE) … a mosquito-borne virus quite active in the U.S. this year, that kills 1 in 3 victims who develop neuro-invasive complications. You may have also heard of West Nile Virus, also a mosquito-borne virus that has caused roughly 25,000 encephalitis cases, and sadly, claimed more than 2,350 lives. 

Those who survive the assault of encephalitis are often left with permanent brain injury, requiring ongoing expert medical treatment and skilled professional rehabilitation. Survivors’ residual symptoms are varied, life-altering and costly, leaving them and their loved ones changed forever.   What’s worse, diagnosis and treatments are complicated:

• ·         More than 50% of cases have an unidentified cause which impedes understanding of prevention or the proper treatment
• ·         Approximately 25% of cases are misdiagnosed, which hampers early treatment and contributes to more pronounced impact
• ·         Approximately 50% of cases do not receive treatments or therapies beyond the acute phase

In the years since Nicole’s death, 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.”  “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 to improve the quality of life for those impacted by encephalitis. With Suzanne’s selfless support, she provided the seed money that has allowed this non-profit to host support groups, conduct research, intervene during crises, and field hotline calls.