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.
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.
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.
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In the 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 has honored Nicole’s life for several years with a “Walk to Cure Encephalitis.” Her own class has supported 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. |
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Even Suzanne’s sister, Wendy Spector-Steinmetz, has supported 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.
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. |
Honoring Wendy Station, Co-Founder of Encephalitis Global
By Becky Dennis, Encephalitis411 Board President
In 1999, Wendy Station was a very active and happy wife, mom and daughter living a life filled with a loving family, working for the Canadian government, guiding young women on camping trips, teaching courses, hosting foreign exchange students, and being the cool mom to the point the neighborhood kids crashed at her house. Her husband Rick adored her and their 3 children, and they loved going on adventures.
In 1999, Wendy Station was a very active and happy wife, mom and daughter living a life filled with a loving family, working for the Canadian government, guiding young women on camping trips, teaching courses, hosting foreign exchange students, and being the cool mom to the point the neighborhood kids crashed at her house. Her husband Rick adored her and their 3 children, and they loved going on adventures.
However, life would change for her that year as she fell ill from encephalitis. She spent a month in the hospital with her family at her side, but left there with the uncertainty of what this illness meant. As she improved enough to get online and search for clues to recovering from encephalitis, she came up empty handed. Being unable to return to work, she took it upon herself to begin a journey of education and awareness about encephalitis alongside fellow survivor, Ingrid Guerci.
She and Ingrid nurtured an email group, then Wendy continued to expand their presence with a nonprofit called Encephalitis Global. She built a website, and she scanned the news each day for encephalitis stories or research, to share with others.
She and Ingrid nurtured an email group, then Wendy continued to expand their presence with a nonprofit called Encephalitis Global. She built a website, and she scanned the news each day for encephalitis stories or research, to share with others.
There was no stopping this passion to help others avoid having the same experience of loneliness of the post-encephalitis journey that she endured. She went on to launch a facebook presence for her nonprofit that gained more than 3,000 followers. She then created an encephalitis forum on Inspire.com that grew to 8,400 members in 119 countries over 13 years. She welcomed each member to share their story.
Wendy hosted many annual conferences that connected survivors, caregivers, and healthcare professionals to reduce the isolation of this rare illness. She welcomed everyone in a selfless, caring manner that put everyone at ease with their seemingly “bizarre” encephalitis experience.
Wendy hosted many annual conferences that connected survivors, caregivers, and healthcare professionals to reduce the isolation of this rare illness. She welcomed everyone in a selfless, caring manner that put everyone at ease with their seemingly “bizarre” encephalitis experience.
With each milestone, Wendy aimed to create forums to help others share, support, and return to a life of hope. She did this for thousands of people across the globe so that they could attempt living a life again where they felt understood.
Many people started their day by checking the Encephalitis Global facebook page or the Inspire.com forum to see what else they could learn. These are people connected by a rare illness that Wendy helped the healthcare community realize… “is NOT that rare!” That was a power she possessed in connecting people with the same struggles… reminding them that they’re not alone.
She offered encouraging words, connected people who needed to know each other, and in the final fight of her life with stage 4 cancer, she didn’t abandon her group. Instead, she remained loyal to connecting survivors and caregivers even when her own body would fail her… again, but for a final time. What a gift she gave in remaining loyal to her “calling.” Even during a day of tough side effects, she continued to welcome fellow survivors and caregivers on their quest for answers. She gave “loyal” a new meaning.
As shared by Father Bob Morris in her Celebration of Life last November, Wendy turned her own devastating experience into 21 years of advocating and connecting with those impacted by encephalitis. In reflecting, as Bob said in his eulogy, Wendy was a kind-hearted spirit. In his words, she was “the Mrs. Rogers of the encephalitis neighborhood.” She encouraged us, shared our heartache, connected us, passionately created awareness among brain injury organizations in the Americas, and took on the burden of feeling the heartache of people’s struggles.
Many people started their day by checking the Encephalitis Global facebook page or the Inspire.com forum to see what else they could learn. These are people connected by a rare illness that Wendy helped the healthcare community realize… “is NOT that rare!” That was a power she possessed in connecting people with the same struggles… reminding them that they’re not alone.
She offered encouraging words, connected people who needed to know each other, and in the final fight of her life with stage 4 cancer, she didn’t abandon her group. Instead, she remained loyal to connecting survivors and caregivers even when her own body would fail her… again, but for a final time. What a gift she gave in remaining loyal to her “calling.” Even during a day of tough side effects, she continued to welcome fellow survivors and caregivers on their quest for answers. She gave “loyal” a new meaning.
As shared by Father Bob Morris in her Celebration of Life last November, Wendy turned her own devastating experience into 21 years of advocating and connecting with those impacted by encephalitis. In reflecting, as Bob said in his eulogy, Wendy was a kind-hearted spirit. In his words, she was “the Mrs. Rogers of the encephalitis neighborhood.” She encouraged us, shared our heartache, connected us, passionately created awareness among brain injury organizations in the Americas, and took on the burden of feeling the heartache of people’s struggles.
Wendy and Becky Dennis
We are so proud of Wendy for seeing everyone without a judgmental lens. She only saw the good in others, regardless of any deficit, financial crisis, or crazy symptoms.
The world is a better place because of Wendy Station. We need more Wendys, who inspire other nonprofits to form to improve lives, who encourage others to celebrate life by simply having the will to live to another day.
Wendy’s mantra was “you are NOT alone” and we will honor that in her memory. Encephalitis411 will continue her tireless efforts to reach others so we can improve the quality of their lives. And we will forever be grateful for Wendy’s service, and setting the bar for helping others.
The world is a better place because of Wendy Station. We need more Wendys, who inspire other nonprofits to form to improve lives, who encourage others to celebrate life by simply having the will to live to another day.
Wendy’s mantra was “you are NOT alone” and we will honor that in her memory. Encephalitis411 will continue her tireless efforts to reach others so we can improve the quality of their lives. And we will forever be grateful for Wendy’s service, and setting the bar for helping others.
Other stories
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Ivo Karlovic – ‘There Were Moments When I Didn’t See The Way Out’
My right arm was tingling. I was home in Miami in April 2013, when one morning I woke up at 8:00 am. At first, I thought I had slept in an awkward position. No big deal. But then my wife asked me a question, and the corner of my lip started drooping. It only got worse from then on and as the hours went by, I lost feeling in my arm and my ability to speak. By the end of the day, I didn’t know my name or what year it was. When medical staff at the hospital asked me questions, I couldn’t respond. There were days when I woke up and thought, ‘Okay, I’m still alive.’ But the headaches would get crazy. It reached a point where the pain was so unbearable, I almost wanted to die so it would stop. It turns out I had encephalitis, inflammation of the brain. https://www.atptour.com/en/news/ivo-karlovic-my-point-2019 |
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Kevin Hang – Back on his skates after a bout with encephalitis
Kevin Hang is happy to put the hockey gear on again. He’s played hockey for half of his young life. He’s part of the Junior Stars, but after being diagnosed with a rare form of encephalitis — he hasn’t played since November. Today, his therapists at Madonna Rehabilitation Hospital coordinated with Kevin’s coach and several of his teammates to have a skating birthday party for his seventh birthday. https://www.1011now.com/content/news/Back-on-his-skates-after-a-bout-with-encephalytus-505473031.html |
Evie Moore’s paranoia was a warning sign of rare brain condition that left her hallucinating and fighting for life
A woman who became jealous and paranoid that her ex-boyfriend was chatting to other girls in fact had a rare brain condition that left her psychotic.
Evie Moore, 23, said she became ‘animalistic’ while in hospital, hallucinating that she was ‘the Messiah’ and even forgetting who her parents were.
She was diagnosed with encephalitis, a condition which causes the body’s immune system to attack healthy brain cells.
In the months leading up to her diagnosis at the end of 2015, the council worker, from Cirencester, Gloucestershire, became ‘totally disorientated’.
She was rushed to hospital when she had a seizure in her parents living room, leading to doctors putting her in an induced coma, fighting for her life.
https://med.news.am/eng/news/20950/womans-paranoia-that-her-boyfriend-was-chatting-up-other-girls-was-actually-a-warning-sign-of-rare-brain-condition-that-left-her-hallucinating-and-fighting-for-life.html
A woman who became jealous and paranoid that her ex-boyfriend was chatting to other girls in fact had a rare brain condition that left her psychotic.
Evie Moore, 23, said she became ‘animalistic’ while in hospital, hallucinating that she was ‘the Messiah’ and even forgetting who her parents were.
She was diagnosed with encephalitis, a condition which causes the body’s immune system to attack healthy brain cells.
In the months leading up to her diagnosis at the end of 2015, the council worker, from Cirencester, Gloucestershire, became ‘totally disorientated’.
She was rushed to hospital when she had a seizure in her parents living room, leading to doctors putting her in an induced coma, fighting for her life.
https://med.news.am/eng/news/20950/womans-paranoia-that-her-boyfriend-was-chatting-up-other-girls-was-actually-a-warning-sign-of-rare-brain-condition-that-left-her-hallucinating-and-fighting-for-life.html
What Success Looks Like Post Encephalitis
Nicola largely relied on a wheelchair, fought seizures and forced her way through speech impairments, among other challenges. She was only 1 year post onset.
After a successful career as an attorney, life looked quite different. Her perspective on “success post encephalitis” is one of humble pie, grace and giving.
“Like most people, E changed my life forever. It stole my career, my ability to remember daily events, and even my ability to speak normally for several years. It re-routed the path of my life, and made it impossible for me to drive or travel alone. It jumbled my judgment and crumbled my sense of self. It slammed the brakes on the life of this go-getter attorney and forced me to sit. Just sit. And just be.”
Even though I didn’t know Nicola before encephalitis, there’s a dash of daring in her smile, an abundance of knowledge in her gaze and a quest for achievement in her style. Being “forced to sit” must have been her greatest feat.
She continued, “It taught me what it means to be helpless, and to be tenderly cared for by a loving husband. Unable to communicate clearly, it forced me to stare into the faces of my children and suddenly, for the first time, truly recognize the depth of their love.”
http://bdbrainwreck.net/2015/08/what-success-looks-like-post-encephalitis
Nicola largely relied on a wheelchair, fought seizures and forced her way through speech impairments, among other challenges. She was only 1 year post onset.
After a successful career as an attorney, life looked quite different. Her perspective on “success post encephalitis” is one of humble pie, grace and giving.
“Like most people, E changed my life forever. It stole my career, my ability to remember daily events, and even my ability to speak normally for several years. It re-routed the path of my life, and made it impossible for me to drive or travel alone. It jumbled my judgment and crumbled my sense of self. It slammed the brakes on the life of this go-getter attorney and forced me to sit. Just sit. And just be.”
Even though I didn’t know Nicola before encephalitis, there’s a dash of daring in her smile, an abundance of knowledge in her gaze and a quest for achievement in her style. Being “forced to sit” must have been her greatest feat.
She continued, “It taught me what it means to be helpless, and to be tenderly cared for by a loving husband. Unable to communicate clearly, it forced me to stare into the faces of my children and suddenly, for the first time, truly recognize the depth of their love.”
http://bdbrainwreck.net/2015/08/what-success-looks-like-post-encephalitis
ABC News – Encephalitis Survivors: Lonely Battles to Reclaim Lives
Becky Dennis delivered one of her best presentations while on a 2008 business trip to India. But within two hours of giving her talk, she couldn’t put together a sentence or move her legs.
“I knew the words in my head,” recalled Dennis, now 42, “but I didn’t know how to communicate them. When I stood up, I didn’t know how to walk.”
Doctors were at a loss to pinpoint the source of her devastating illness.
Back in the states, Dennis’ health declined. She kept losing weight, couldn’t taste or smell anything, and was sleeping all the time. She shuttled around to more than a dozen doctors over the next 30 months and was variously diagnosed with stress, a stroke, and a complex migraine. Experts also told her that it was all in her head, she said in an interview Tuesday.
Unfortunately for many patients with encephalitis, often doctors haven’t seen many cases and don’t know the telltale symptoms, and many patients may not find their way the neurologists and other specialists who do.
And encephalitis can be particularly difficult after it is diagnosed and treated since, after the initial acute illness passes, some patients are left looking normal but suffering from the silent ravages of the infection. Health insurers may deny longer term rehabilitative care, including comprehensive speech, physical and occupational therapy that can improve recovery.
https://abcnews.go.com/Health/surviving-encephalitis/story?id=15808508
Becky Dennis delivered one of her best presentations while on a 2008 business trip to India. But within two hours of giving her talk, she couldn’t put together a sentence or move her legs.
“I knew the words in my head,” recalled Dennis, now 42, “but I didn’t know how to communicate them. When I stood up, I didn’t know how to walk.”
Doctors were at a loss to pinpoint the source of her devastating illness.
Back in the states, Dennis’ health declined. She kept losing weight, couldn’t taste or smell anything, and was sleeping all the time. She shuttled around to more than a dozen doctors over the next 30 months and was variously diagnosed with stress, a stroke, and a complex migraine. Experts also told her that it was all in her head, she said in an interview Tuesday.
Unfortunately for many patients with encephalitis, often doctors haven’t seen many cases and don’t know the telltale symptoms, and many patients may not find their way the neurologists and other specialists who do.
And encephalitis can be particularly difficult after it is diagnosed and treated since, after the initial acute illness passes, some patients are left looking normal but suffering from the silent ravages of the infection. Health insurers may deny longer term rehabilitative care, including comprehensive speech, physical and occupational therapy that can improve recovery.
https://abcnews.go.com/Health/surviving-encephalitis/story?id=15808508
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For those who’ve followed Rylee Kinnett‘s story, today we honor her with a story that documents her encephalitis journey.
Click here to read more about this amazing young woman. |