Written by By Sarah Walker, CNN
For the past 26 years, Jessie Armstead has been struggling with epilepsy. It hasn’t been easy, and these days, like many patients with epilepsy, her seizures are so frequent that some days are just a blur of flashing lights, ringing noises and violent shaking.
But while treatment has helped greatly, it hasn’t helped the kid that doctors and families said she would always be: smart, happy and full of energy. When time away from treatment, such as the first two years of school, turned into 14 months in class, other doctors told the family it was because she was not pregnant.
It’s a common reason for seizures in kids with epilepsy, according to Dr. David Gilboa, chief medical officer for Epilepsy Foundation of Greater Philadelphia. “It’s a hopeful inference until that child is actually medicated,” he says.
With each passing month, this frustrating experience for the family only seemed to get worse. The seizures come on suddenly and ruin years of hard work. Jessie had to miss school and get used to sitting in a wheelchair.
So when doctors finally diagnosed Jessie with epilepsy after she was playing sports with the rest of her older sisters, she was ecstatic. “All of us have tried (treatment) for quite some time — it just didn’t seem to be a solution,” said her mother, Bea.
“But once we learned she had epilepsy, we were shocked,” said her father, Mark.
“I was quite amazed,” he said. “When she’s seizure-free, it’s just so much easier.”
Now, every weekday, he takes the train into work and quickly leaves the station, ignoring the train whistle.
But while home, it’s not safe for them to ride on public transportation. “The driver will blow his whistle and I’ll say, ‘I’m sure it was your daughter’s insurance (paycheck),’ ” Mark said.
Instead, he makes the short trip to the shopping mall where he can carry his daughter in his arms, allowing her to go up and down, move her arms, kick and play with her toys.
Once at the mall, her Dad will pick her up at the snack counter for a quick sandwich and then wait for her to come back down to collect her bottle, which comes with coloring books and so much more.
And every day, they’ll do it. Each pass through that door is a victory for them. It’s always worth it, according to them.
Because Jessie can’t do much of her usual thing that she loves, it seems like medicine is a cop-out. They say no, “No!” to doctors who tell them there is nothing they can do. But for the first time since she was 2 years old, she says yes. She will take her medication, as her parents knew it was there to save her.