Grace Mary Witwer lived 20 months.

And took 15 ambulance trips.

The first was when she was 4 months old and had an epileptic seizure that afflicted her for 45 minutes. EMTs en route were desperate to get rescue medication into Gracie's tiny body.

“But they couldn't get an IV in,” said Gracie's mom, Becky Witwer of Hamburg. “So in the ambulance, they had to drill a hole into her shin to get the meds in.”

It was the beginning of a ravaging 16-month road for Gracie and her family, which then lived in Fleetwood. That journey — filled with thousands of prolonged seizures, brief seizures and all sorts of seizures in between — ended four years ago next week.

The toddler died in her sleep on Nov. 11, 2015.

The killer was something called Dravet syndrome, a catastrophic condition that the Epilepsy Foundation says strikes only 6% of epileptics under 3 years old and affects 1 in 15,700 people.

“It means that they'll never outgrow the epilepsy, and it's extremely hard to control,” Becky said.

There's a saying, she said, among Dravet syndrome families.

“Dravet kids are allergic to fun,” Becky said. “Basically, anything that's fun causes seizures.”

“Yeah, pretty much,” said Christina Schniegenberg of Danville, Calif., a fellow Dravet's mom who befriended Becky via a Facebook support group some five years ago. “Any excitement causes seizures.”

Which means common childhood thrills turned to cruelties for Gracie.

Tragic triggers

A new toy. Playgrounds. Birthday parties. Family get-togethers. They all triggered episodes for Gracie.

Even more wrenching, so did her daddy's return to the house.

“When my husband came home from work,” Becky said, “she'd have seizures.”

Richard Witwer, Gracie's father, and Becky had only so many tools at their disposal during such heartbreaks. If they used too much prescribed rescue medication, Gracie's body would develop a tolerance, steadily lessening the meds' efficacy.

So sometimes they had to simply watch and wait.

All of which meant endless seizures for Gracie and endless anxiety for the Witwers.

“You get nervous for Christmas or Thanksgiving,” Becky said. “You want your other kids to have fun, but at the same time you're like, 'I hope she doesn't have a seizure. I hope we don't end up in the ER.' ”

As all-encompassing as the excitement issue was, it wasn't the only problem. Far from it.

A body temperature of 99.4, the slightest of fevers, would bring seizures.

“For a normal child, you'd call a pediatrician and they'd say, 'That's not a fever,' " Becky said. “But for Gracie, she would seize.”

Heat was a trigger, too; Becky put Gracie in a cooling vest when it was hot outside.

A sunny day? That was a minefield for the Witwers.

“She had photosensitivity to the sun, and it would cause seizures,” Becky said. “I would put sunglasses on her, patch one eye, put a hat on her.”

The long and the short

Epileptics, depending on their specific situation, suffer from a far broader set of seizures than the general public realizes. Episodes go well beyond the brief, blinking spasms we generally associate with the condition — although Gracie had those, too.

They also go beyond the lying-on-the-ground, kicking convulsions, or grand mal seizures, we conjure when we picture epileptics — although Christina Schniegenberg's daughter Morgan, now 7, had plenty of those.

The Epilepsy Foundation lists 13 seizure categories, many with a host of subsets, on its website.

Gracie sampled plenty of them.

“She would have a couple hundred every day,” Becky said, “and she would have them all day long.”

For simplicity's sake, and Gracie's situation was anything but simple, we'll separate the seizures here into short ones and long ones.

The short ones were myoclonic seizures.

“(They) are brief shock-like jerks of a muscle or group of muscles,” the Epilepsy Foundation says. “ … During a myoclonic seizure, the person is usually awake and able to think clearly.”

Gracie's myoclonic episodes, while quick, were perilous.

She'd hit her head on the floor while crawling. She'd fall off chairs. In playgrounds, Becky constantly clung to Gracie's hand, fearing a myoclonic seizure at any moment.

The longer seizures, the ones that most dented the Witwers' souls and sometimes sent Gracie to the hospital, were status epilepticus seizures. They are any category of seizure that lasts more than five minutes, “or (that) … occur close together and the person doesn't recover between seizures,” the Epilepsy Foundation says.

Gracie's lasted 15 minutes to an hour.

Hard on everyone

Calling Dravet's challenging is like calling a tsunami a spritz.

“You basically become a prisoner in your home,” said Christina, who for about a year before Gracie's passing helped Becky manage Gracie's diet and medications. “You don't really leave much, because leaving means you're going to pay for it. It's so extreme that you basically are confined to the walls of your home.”

That was certainly the case for the Witwers.

“You can't go to parties,” Becky said. “You can't do holidays. If someone has a runny nose, you have to say, 'No, we can't go.' ”

The Witwers — Becky, 35, Richy, 39, and their children Juli, 10, Olivia, 7, Emily, 2, and Cole, 1 — now live in Hamburg.

When Gracie was alive, Juli was 4 and 5 years old. She became a second mommy to Olivia, who was 1 and 2 during Gracie's life, whenever Gracie would have her most severe issues. As Becky scrambled to get Gracie ready for the hospital, Juli would prepare Gracie's diaper bag to take to the ER. Then she'd comfort Olivia.

“She'd have to be the motherly type for her,” Becky said, “and tell her, 'It's OK.'”

Of course, all that hardship paled in comparison to the pain of Gracie's death. She passed of Sudden Unexpected Death in Epilepsy, which is like Sudden Infant Death Syndrome, but with no age range.

Which means any Dravet's death hits the syndrome's community particularly hard, because “you feel like your own child's clock is ticking,” Christina said.

“You feel like it's probably going to happen (to your child), but you don't know when,” she said. “It brings that fear back to reality every time.”

The statistics say roughly 1 in 5 Dravet's kids won't live to adulthood.

Undereducated, underfunded

November is National Epilepsy Awareness Month, and Becky wants Gracie's story to serve as a starting point to educate the public about both Dravet syndrome and epilepsy in general.

“People just think epilepsy means people have seizures, and that's not it,” Becky said. “People die from seizures every day.

“I'm always heartbroken that there's not enough attention to epilepsy. I want people to be aware that epilepsy exists, and there's not enough funding, and there's not enough effort to cure it.”

That's putting it mildly, Christina said.

“People are so uneducated about it,” she said. “They don't understand what it is, why it is, and how to deal with it. And the lack of compassion because of that is so evident.

“Kids will have seizures in public, and moms will tell me that other kids will come by mocking them and pointing at them.”

The lack of understanding links closely to the second formidable problem: lack of research funding. Despite being more common than Parkinson's, multiple sclerosis or ALS, epilepsy fetches significantly fewer research dollars.

According to the Milken Institute's “Giving Smarter Guide for Epilepsy,” Parkinson's gets 10 times more combined private-government funding than epilepsy, which is six times more prevalent. One Parkinson's nonprofit alone, the Michael J. Fox Foundation, spent $75 million on direct research in 2017.

The National Multiple Sclerosis Society reports direct research grants of roughly $39 million that year, and the ALS Foundation reports it spent about $16 million on research that year.

But according to the National Institutes of Health, the top three epilepsy research agencies spent less than $4.5 million — combined — in 2017.

“The issue has two parts,” said Kerri Michnya, a spokesperson for Epilepsy Foundation Eastern Pennsylvania. “The first part is that it is a hidden disorder, which means unless somebody discloses that they have seizures or epilepsy, it can be hidden; nobody has to talk about it.

“That leads to the second part, which is that because we don't talk about it, that creates a stigma. And because the stigma still exists, that means we don't understand it. And when we don't understand it, that means we're less likely to fund it.

“Autism and Alzheimer's, they get talked about.”

And thus are better funded.

From 2007 to 2014, the National Institutes of Health reports, autism funding spiked 106%, Alzheimer's research rose 37%, from $411 million to $562 million, while epilepsy funds went up just 9%, from $145 million to $158 million.

“It's massively underfunded,” Christina said.


Becky wants the world to know that while Gracie's life was too short and too hard, it was also wonderful.

“When she wasn't having the seizures, she was just so happy,” Becky said. “She was full of life.”

But Becky is human. She wonders how someone so tender and delicate and innocent and new can be afflicted with something so debilitating, so onerous.

“My faith is strong,” Becky said. “But I wish she could still be here. I wish she could've had the chance to have a life like everybody else.

“And I think, 'Why her?'”

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