Family works to end epilepsy stigma
It was 9/11 when Pat Atkins first walked into the living room to see her three-year-old daughter, Faith, staring straight ahead with jittery eyes and shaking uncontrollably.
She had just turned on her TV and the terrible events that day in New York City began rushing into their home.
“It’s almost like she wasn’t aware that I was there,” said Pat.
The television continued its reel of horrific footage of fire and explosions.
Once the shaking subsided, the infant slept for a solid two hours. Pat knew this was out of the ordinary; it wasn’t anywhere close to nap time.
Days later, she found herself and Faith in a doctor’s office.
“(The doctor) said, ‘I’m just going to put down that she got a fright from when the TV cut in with the fire and the explosions, but I’ll send a recommendation for a neurologist to have a look,’” said Pat. “She seemed fine otherwise, but I knew as a mom that something was not right.”
Days later, Faith was seen by a neurologist.
A few stress-filled weeks passed as the family waited for a diagnosis, their thoughts overcome with the grave possibilities. Soon, though, they heard back from the neurologist that what Faith was dealing with was an arachnoid cyst, which is a small fluid-filled sac in the brain that causes frequent seizures.
Now, with an epilepsy diagnosis, Pat knew this would forever be something Faith and the family would deal with. What she didn’t know at the time was what it would eventually become.
Faith, who is now 24 years old, was in the sixth grade when she decided she would raise awareness for epilepsy.
It started with Purple Day, a school-wide campaign that encouraged people to show their support for people with epilepsy by dressing in purple T-shirts. Faith became an ambassador for Purple Day, an international awareness day. She began to plan events around her school such as poster making and a dress-in-all-purple competition, but it eventually wasn’t enough for the determined young girl.
Soon, Faith and Pat were starting their epilepsy awareness campaign Don’t Fear the Purple, incorporating Pat’s business background with Faith’s creative flair.
“Faith always had her own style. That’s just her personality, and that’s kind of how we wanted this whole Don’t Fear the Purple thing to be. So every year, we try to do something different,” said Pat.
For the mother and daughter team, Don’t Fear the Purple is a year round event.
Don’t Fear the Purple holds fundraisers such as raffles to raise money, which they then donate to Epilepsy NL. This year, they auctioned off a large gift basket and made over $3,400, of which Pat matched the amount – leading to a donation of over $6,800.
It is not just about the money. Pat and Faith are also determined to end the stigma when it comes to epileptic seizures and what should be done when faced with one.
“Usually what you would do is hold my hand and ask ‘are you OK?’ And then just keep talking and seeing if I’m fine. Usually, I’ll respond back when I’m fine,” said Faith.
At the height of her condition, she was having approximately 195 seizures a week.
Now after finding the right blend of medications, Faith only has two seizures a month.
“We’re helping people to understand what epilepsy is,” said Pat. “Not every seizure is the same.”