Sun falling on the parking lot of Woods Creek Elementary School, a growing purple mob awaits migration.
It is Thursday night, July’s last hurrah, four X’s on the calendar until 22-year-old Ashley Kelley goes in for her life’s second major surgery. This time, doctors will take out a piece of her skull and replace it with a newly FDA-certified device called a NeuroPace RNS System.
The hope – a word Kelley’s Crystal Lake family uses often – is that the NeuroPace controls or reduces or maybe even completely stops all these seizures. Kelley suffers between 15 and 20 of them a month, ranging in duration and intensity but sometimes teetering toward life-threatening. Her mother tracks them in a pink binder, and it is thick.
Purple is the color given to epilepsy awareness, and this parking lot is acutely aware.
A couple families came together to make shirts in the color of the cause. They adorn the majority of the crowd, which surely tops the 122 people who accepted the invitation on Facebook.
“Look at all these people she’s touched,” said Gina Smak, Kelley’s boss at a Woods Creek-based before and after-school program. “Is it not amazing to be a part of this?”
At 8:01 p.m., the group herds across the street, toward the house on the corner. They’re off to greet Kelley with a send-off and prayer vigil – a show of support for a young woman who’s been through a lot.
But it’s a surprise.
Risks rise as time goes by
Kelley’s first seizure came at 16 months, presenting itself in a way now familiar but at the time foreign – and frightening. A second ago, she’d been giggling on the swings. Now she would give no reaction to the cues of her parents.
Emergency responders told the Kelleys their daughter was having a seizure – and a serious one, at that. It was the beginning of what has become an unpredictable life.
Kelley, to this day, rarely gets the more noticeable Grand mal seizures, which present as violent muscle contractions. But, as time ticks and Kelley doesn’t come out of a seizure, the risk of lifelong complications increases.
“Her heart rate continues to drop, and it gets so low that without medical intervention, we’re not going to get her back,” Gail Kelley said.
Brain damage, too, becomes a risk at a point.
Lately, the seizures have been coming more frequently – more than once a day at times. At best, they’re done in 25 or 30 seconds.
The worst of them stretch seven or eight minutes. It’s for those instances that Kelley’s friends and relatives carry one-milligram, dissolvable tablets of a drug named Clonazepam. If the seizure persists long enough, they place one under Kelley’s tongue. They place a second if the first doesn’t kick it.
“The two of them went with their uncle and cousins out to dinner the other night. [I asked], ‘Do you have a pill?’ ” Gail Kelley said. “We’re just always thinking ahead. We have to.”
Surgery offers new hope
On Monday, Kelley will become the first patient at Rush University Medical Center to receive the NeuroPace RNS System since it was approved by the U.S. Food and Drug Administration.
It works like this: surgeons take out a piece of the skull and implant the NeuroPace – a programmed computer chip roughly half the size of an iPhone – in its place. They connect it to electrodes, spread strategically throughout the brain where the seizures start. The NeuroPace system then detects abnormal electrical activity in the brain and delivers small bits of electrical stimulation to stop seizures before they begin.
At least, that’s the hope.
Patients who’ve received the implant have fared well during decadelong clinical trials, according to a news release from Rush University Medical Center. The device led to the complete elimination of seizures in nearly half the patients.
The Kelleys have kept their expectations somewhat tempered, partly because of what history has taught them. At age 9, Kelley had her right temporal lobe removed, a procedure that stopped the seizures for more than a year before they slowly crept back into her life. The decision to pursue that surgery was ultimately her parents’ – and the two struggled with it, Gail Kelley said.
This one is Ashley’s, and the decision came easy.
“I would like to be more independent,” Kelley said. “I would like to be able to drive. I would like to be able to finish my classes, and maybe find another job ... a life job, a full-time job.”
Asked about her expectations for after the surgery, Kelley used that word again. The one tattooed on her mother’s wrist, and in bold, wooden letters painted purple on the Kelleys’ fireplace.
“My hope is that it works,” she said.
A little girl in a purple dress climbs the couple steps to the Kelleys’ door, stretches, rings the doorbell and retreats.
Then, one door swinging inward, Ashley Kelley reveals herself behind the glass. Her family – her parents, Gail and Jim, her sister, Kourtni, 17, and brother, Ryan, 24 – fills in behind her.
“This started just a couple weeks ago as a little idea,” said Tammy Bielfeldt, who organized the vigil.
People have crowded around the Kelleys’ walkway, filling their yard, spilling into their driveway and across the sidewalk.
Ashley Kelley thanks them. She gets surrounded by a dozen or so children she works with at the before and after-school program. She gives more hugs, returns to her family, cries hand-in-hand with her mom.
Bielfeldt says, into the microphone, that she does not have to mention how wonderful Ashley Kelley is.
There’s an entire purple mob to do that.