On November 14, 2017 Jacob Shotz earned his wings after a lifelong battle with Lennox-Gastaut Syndrome (LGS), a rare childhood epilepsy characterized by multiple and concurrent seizure types and cognitive delays.
While Jacob’s time on earth was short, he left a profound impact on everyone he touched. His brilliant smile, contagious laugh and joyful innocence taught his mom and biggest advocate, Gloria, to enjoy the simple things in life.
“Jacob had a greater purpose. His purpose was to teach us all to take a deep breath and enjoy the things we take for granted. He is here, now, guiding me to do the things I am doing.”
Jacob lived with Cerebral Palsy and Lennox-Gastaut, which the family later discovered was related to a rare genetic mutation of the KCNB1 potassium channel. He experienced anywhere from 350 to 1,200 seizures per month. Despite trying a wide range of treatment options including the ketogenic diet, brain surgery, the Vagus Nerve Stimulator (VNS), and clinical trials, Jacob only received temporary relief from the seizures.
Although he faced challenges every day, Jacob was never defined by them.
Jacob loved books, bubbles, his bed and endless walks in the park with his dad, Howard. His art therapist and nurse at the HMS School for Children with Cerebral Palsy, and later the Life Child Program at CHOP, helped him capture his unique vision of the world with paintings. He loved listening to his favorite songs with his music therapist and laughed often, even when his seizures returned.
In February 2017, Jacob was hospitalized for the flu. After being admitted, he went into status, which meant his seizures would not stop. Jacob’s neurologist decided it would be best to put him in a medically induced comma to give his brain a chance to rest and reboot. After 13 days, Jacob defied the odds and woke up.
Throughout that year, Jacob and Gloria spent 171 days at CHOP but never lost hope. In early November, Jacob was once again admitted to the Hospital where he faced another intense round of rescue medications.
Jacob was surrounded by his close family, his remarkable CHOP team, and all of the love in the world on November 14, 2017.
November is National Epilepsy Awareness Month and a very special time for the Shotz family. This November, Gloria worked to turn Doylestown purple in honor of Jacob and those battling epilepsy. She hung purple awareness ribbons throughout town to continue Jacob’s legacy of apathy, strength and perseverance.
The Shotz family and friends will visit Jacob’s memorial bench at Peace Valley Park in Bucks county to release purple balloons on November 14th, the date Gloria advocated to be KCNB1 Awareness Day in memory of Jacob.
The EFEPA is proud to recognize today as KCNB1 Awareness Day and honor the life and legacy of Jacob Shotz. We are honored to celebrate National Epilepsy Awareness Month alongside the Shotz family and all of the Epilepsy Warriors in our community.
Nicole Spross’ story is one of resilience. While her battle with epilepsy has had its ups and downs, she stays strong and full of hope in the fight.
Nicole was two years old when she had her first seizure. She was born premature at 28 weeks gestation and suffered from a brain bleed a few days after birth. As a toddler, she began having seizures one to two times a year and taking medication three times a day. Her condition improved and for a ten year span she was seizure-free, working an office job and decreasing her medication dosage.
But Nicole’s battle wasn’t over yet.
“I asked my neurologist if I could try to wean off my medication,” Nicole explained. Twelve days after taking her last dose she unexpectedly had back to back gran mal seizures, something she had never experienced before.
“I felt hot, sweaty, lightheaded, dizzy and had a fast heart rate before the gran mal,” Nicole recalls. At the time, she did not recognize her symptoms as an aura before the seizure. Her sister was there, able to call 911 and get her to safety. Following the hospital visit, Nicole was put on two different medications before her seizures reduced to simple partial and eventually diminished.
Throughout her fight, Nicole has found friendship and community with the EFEPA. She shines as a counselor at Camp Achieve and enjoys volunteering her mornings with her mother, Cathy, at the Foundation.
Nicole’s seizures have been controlled since June 2018. This November, we celebrate five months seizure-free!
“When you have epilepsy, you have to make the best of things and take each day at a time.”
Lisa Schreiner’s words ring true. For many living with epilepsy, the battle can last a lifetime. Yet, fighters like Lisa have the spirit to stay optimistic.
At nine years old Lisa had her first seizure. At first, her parents tried to hide her epilepsy from her eleven siblings. Her parents were scared of the diagnosis and thought her siblings would be frightened to see her seize. Not long after, her brother witnessed her experiencing a seizure, which she feels frightened him more because he did not know what was happening.
“This was the beginning of my life battling epilepsy. Pill after pill, lab work, tests…” Lisa explained.
But 25 complex partial seizures a month didn’t stop Lisa from moving forward, finding love and starting a family. After the birth of her first child, Lisa’s generalized seizures stopped, which she attributes to hormonal changes in her body.
While her family grew, her treatments to control her complex partial seizures intensified.
Lisa received six multiple subpial transection (MST) surgeries, which cut her frequency of seizures in half! Lisa also had the Vagus Nerve Stimulation (VNS) device implant, changed medications and tried the Ketogenic diet. Throughout the process and various combinations of treatments, Lisa’s frequency of seizures has fluctuated.
It has now been 50 years since Lisa was first diagnosed with epilepsy. Yet, she has never let epilepsy define who she is.
Lisa Schreiner is a wife, a mother of four and a true epilepsy warrior.
Kyle Wallace turned his obstacles into a business and his diagnosis into a passion he could share with the community.
When Kyle was in his mid-20s he began having seizures. While he saw some improvement with medication, he turned to his dietary habits when morning seizures persisted.
After doing research online and discussing it with others who had similar experiences, Kyle decided to supplement his treatment with a ketogenic diet, which is a low carb, high fat diet with strict limitations on sugar.
The only problem? There was no suitable replacement for cookies! Enter The Burning Cookie.
The Burning Cookie is a ketogenic friendly bakery established in 2018 by co-owners Kyle Wallace and Jennifer Portland. The partners saw the need for a bakery that catered to special dietary needs and opened the store this year in Yardley, PA.
After nearly 6 months of honing their craft to produce a delicious cookie substitute Kyle explained, “We realized that the expense and time that goes into the process is difficult for others to produce on their own.”
Kyle is now 34 years old, and while still taking Lamictal on a daily basis, credits his improved condition to his diet. Kyle and Jennifer are both keto practitioners and advocates for the ketogenic diet. The Burning Cookie is their way of sharing the lifestyle that changed the way they think and feel about food.
During the month of November, The Burning Cookie will be donating a portion of all keto-friendly cookie sales to the EFEPA! Indulge your sweet tooth, support a local entrepreneur, and give back to the EFEPA by checking out The Burning Cookie at theburningcookie.com.
Thank you, Kyle!
“It’s been a long journey, but I have faith there is a true and meaningful purpose in the works.”
Julie Lick’s journey, as the mother of a child with epilepsy, was one that no parent should ever have to face.
Julie abruptly and unexpectedly lost her son, Ethan, to Sudden Unexpected Death in Epilepsy (SUDEP) last January. He was only 24 years old.
Ethan’s battle began when he was three years old. He was diagnosed with Landau Kleffner Syndrome, a rare childhood disorder characterized by the loss of language comprehension (auditory verbal agnosia) and verbal expression (aphasia) in association with severely abnormal electroencephalographic (EEG) findings during sleep and clinical seizures in most patients. Ethan experienced seizures in his early childhood, but went into spontaneous remission during his adolescent years.
On January 30, 2017, Ethan’s battle suddenly came to an end, without warning or explanation. But Julie’s fight was far from over.
Julie’s family had never even heard of the term SUDEP until after Ethan’s passing. So, she’s shining light on SUDEP. Her efforts have gained momentum and she plans to keep the fight going in memory of her son. She has taken her tragedy and turned it into a platform to honor Ethan and spread epilepsy awareness so every family knows the facts.
“We hope somehow, someway … something good and beneficial will come out of Ethan’s passing.”
For National Epilepsy Awareness Month, Julie launched a month-long fundraiser for the EFEPA, which began on October 23rd, SUDEP Action Day. Julie sold raffle tickets at her company throughout the week, and JP Mascaro and Sons matched every donation! She also encouraged her coworkers to wear purple on Fridays, the day she raffled off the prizes.
Her efforts are having a big impact. Not only is she helping to spread awareness by educating her company and coworkers, but as of November 16, the group had raised $1,250!
Julie’s hope and strength is contagious. The EFEPA is proud to stand alongside Julie as she raises awareness so that someday we can live in a world free of seizures and the tragedies of SUDEP.
Thank you, Julie, for sharing your story and strength. You are a true Epilepsy Warrior and we are grateful to have you in our community.
To learn more about Sudden Unexpected Death in Epilepsy (SUDEP), visit https://www.efepa.org/living-with-epilepsy/sudep/
Taylor Plimpton recalls the moment her battle with epilepsy began. She was 15 years old and getting ready for a normal day at high school, “Next thing I knew I was on the ground with people all around me. I was being put onto a stretcher and carried down my stairs into an ambulance outside.”
Taylor was only months away from getting her driver’s license, but within the next month she had a second seizure and was diagnosed with epilepsy.
“The entire process was trial and error,” Taylor explains. She had sporadic seizures while trying different medications, often experiencing troubling side effects before lapsing back into seizures. “There was even a time I had to miss school for about a week because the medications had me so out of it.”
Epilepsy didn’t stop Taylor from being like any other teenager, balancing school and responsibilities and attending Junior Prom. The dance was a success, but after being seizure free for nearly eight months, two days after Prom she was admitted to the ICU for cluster seizures. She was hospitalized for three days before her care team found the right medication.
“Even though I have had to go through what I did, I consider myself extremely fortunate to be where I am today.”
In 2016, Taylor became a counselor at Camp Achieve, the EFEPA’s overnight camp for kids with epilepsy. Whether sharing her experiences of running into lockers and not being able to read notes on the board as she adjusted to her medications or helping a new camper find their way to the gaga pit, Taylor brings compassion and a fun-loving spirit to her role as mentor and friend.
While Taylor’s journey with epilepsy has been filled with ups and downs, she’s stayed strong and positive. And since Prom, Taylor has been seizure-free for 4 years!