By Debby Simon

On the afternoon of November 20, an unusual event took place at PetSmart in Overland Park. Jorie Simon, her parents, and the family’s golden retriever, Daisy Mae, served as hosts for a FUNDraising event titled, ‘GRRR FOR A CURE, benefiting C.A.R.E.S. KS Foundation.’ (Canine Assistance Rehabilitation and Education Services.)

Fundraiser and Awareness Raiser
\The organization provides trained, certified canine assistance in several areas: seizure alert, service, therapy, signal, Parkinson’s support and therapeutic emotional support. The not-for-profit organization, located in Concordia, Kansas, has “one of the country’s highest canine placement success rates,” according to Megan Lewellyn, Canine Assistance Director. “We’re currently at 83%.”

For three and a half hours, Daisy, Jorie and her parents solicited contributions. A six foot table was strategically placed inside the store’s main entryway, decorated with a colorful banner, sporting GRRR for a Cure and the C.A.R.E.S. logo.

A Unique Participant
GRRR3 for a Cure’s uniqueness was enhanced by Daisy’s participation, both in preparing for the event and in providing choices for ‘thank you’s’ offered to everyone who contributed. Thank you options included: original artwork created by Daisy; having Daisy perform an impressive trick; or receiving a copy of Daisy’s favorite recipe for vet approved home-made dog biscuits. All options were greeted with smiles, and Daisy happily provided more than one thank you for most contributors. Additionally, bright orange sheets of paper with instructions on first aid for seizures were available to all shoppers.

“We’re so thankful to store manager, Amy Seuferling for allowing us to hold our event here,” the Simons stated.

Epilepsy Awareness Month
November was epilepsy awareness month, which is why GRRRR FOR A CURE was held in November. Since C.A.R.E.S. trains seizure assistance dogs right here in Kansas, it was selected as the beneficiary. The Simon family knows firsthand of the difficulties faced by those with epilepsy.

Jorie was diagnosed with absence (pronounced ab´-sahns) seizures at age eight. Though 75% of children with absence seizures outgrow them before or during their teenage years, Jorie was not so lucky. At age nine, she began having grand mal seizures. Now identified with juvenile myoclonic epilepsy, she was placed on anti-seizure medications. The side effects were rough. As Jorie approached her teenage years, her seizures increased in frequency and duration. Each time a seizure occurred, her doses were increased, doping her up and, ultimately, making her feel like a zombie.

Painful Stigmas
Jorie and her family learned, painfully, of the stigmas and superstitions still surrounding this often misunderstood neurological condition. They also learned that epilepsy is the second highest cause of death among young people. Every five minutes, another child is diagnosed; over three million people in the United States, more than the number affected by cerebral palsy, MS, muscular dystrophy and Parkinson’s disease combined, all have epilepsy.

Surprisingly, people are not the only ones affected by seizures. “All mammals can have a seizure,” veterinarian Kent Callicott said. “And many animals can have epilepsy. It’s more common for some animals than others. For example, is more common in dogs than cats.” No cure for epilepsy exists, but when one finally comes, it will benefit humans and animals who are affected.

Seizure Assistance Dog
Jorie’s seizures continued. The Simons began searching for a seizure assistance dog. When they learned that the cost of raising and training these special dogs averages between $20,000 and $25,000, their hearts sank. Then they learned about an organization in Georgia operating on donations that didn’t charge families. They immediately applied only to learn of the five to seven year wait.

Though dog people, the Simons had been without a family dog for two years following the loss (from old age) of  their beloved, neurotic sheltie. When grief passed, Jorie began asking for a golden retriever. Her parents held off, hoping that, somehow, they would get a seizure dog. But it never happened.

Just before Jorie turned 13, a close friend called, saying that a golden retriever, already housebroken, needed a home. The dog was not quite 13 months old and was living in an animal foster home. “It’s a sign,” Jorie insisted, when warned that she shouldn’t get her hopes up in case the dog ended up with someone else. “This dog is about to turn 13, and so am I. Thirteen is a lucky number.”

Jorie was right. Much to the surprise of her foster caregiver, Daisy, the beautiful redcoated retriever, immediately came when Jorie called her. Somehow, Daisy knew she was needed. Though not a trained seizure or therapy dog, Daisy sensed that Jorie was having a tough time. Kids with epilepsy face many severe issues, including self-esteem. Others don’t know about the daily struggle of going to school, living in fear that a seizure might occur in front of classmates. Daisy was wonderful therapy. Though she never alerted anyone when Jorie had a seizure, afterwards, when Jorie needed to sleep, Daisy would lay next to her, refusing to leave her side.

By ninth grade, Jorie's seizures were so frequent with drug doses high and ineffective, something had to be done. At the urging of her epileptologist, Dr. John Croom, Jorie entered the epilepsy center at St Lukes where she remained for eleven days. Weaned off her previous drugs and gradually introduced to a different one, the new drug worked! It controlled Jorie's seizures. Her life turned around.

Seizure Free
Now a senior in high school, Jorie has been seizure-free for 33 months. She enjoys school, is active in extra curricular activities, is now driving and is applying to college, where she plans to double major in education and psychology. “I like working with kids,” Jorie says. “I hope I can help kids learn to deal with difficulties that other kids might not understand.”

Jorie’s parents know that, when she leaves for college, she will face important choices. Lack of sleep, drinking and drugs, common at most schools, can all trigger seizures. With hopes that their daughter will remain strong and seizure-free,  they discussed the idea of creating a fundraiser that would benefit epilepsy and be meaningful to Jorie.

Through a friend of a friend that the Simons met at the Kansas City Epilepsy walk, the family learned about C.A.R.E.S. “I wish we’d known about this organization years ago,” Jorie's father said.

“It’s not unusual that people haven’t heard about us,” Lewellyn stated. “C.A.R.E.S. relies on word of mouth, and does no advertising.”

Seven-year-old Nat, who lives in eastern Kansas with his family, knows all about C.A.R.E.S. Nat has seizures that often occur at night. For his safety, Nat had to sleep in his parents’ bedroom. Things changed when C.A.R.E.S. provided Nat with Kellogg. The seizure dog is trained to get help and alert Nat’s parents if Nat has a seizure. Nat now sleeps in his own room with Kellogg, who also attends school with Nat.  

“I know I could have used a service dog before the epilepsy center,” Jorie says, “but then I wouldn’t have met Daisy. And I know I'm lucky my seizures are controlled.” That understanding, and her love of dogs are the main reasons that Jorie was enthusiastic to work on GRRR FOR A CURE.

A Success
The event was a success! Sixty-four customers took time to stop by the table and donate to the cause. Daisy's wagging tail salutes all who contributed!

Debby Simon is the proud mother of Jorie Simon (as well as her two older brothers,) a dog person, and a freelance writer. She recently finished her first novel about her one and only childhood dog.