What a difference a year can make.
On Tuesday afternoon, 18-month-old Knox Kopf was a little man in motion — playing with toys, slipping through open doors and crawling all over everything, including his parents, in their sun-lit Mattituck living room.
Last year at this time, first time parents Eric and Keylin Kopf were enduring what the baby’s Mt. Sinai pediatric neurosurgeon would later liken to a nightmare. Just before Christmas, six-month-old Knox began suffering seizures.
“Witnessing a seizure is one of the worst things a parent can go through … it is just the most frightening event imaginable,” said Dr. Saadi Ghatan, Mount Sinai’s director of pediatric neurosurgery, who diagnosed and later operated on the child following what the Kopf’s described as a harrowing episode at a Long Island hospital last Christmas season.
In early December 2024, they began to sense something was not right with their new baby. Eric said that Knox had started to roll — but then stopped.
“He wouldn’t move a lot,” Keylin said.
Then came seizures.
“He started dropping his head … and his eyes would roll to the side, and he just wouldn’t be responsive to me,” Keylin said. “They felt like forever, but it was just seconds.”
As a new mother, she heard familiar reassurances that babies are unpredictable, but knew that wasn’t it. “This isn’t normal. There’s something wrong.”
The episodes began around Dec. 9, Eric said, disappeared briefly, then returned. One night at his mother’s house for dinner, it happened, and then twice the next morning.
“Three times in basically 24 hours,” Eric said.
The couple tried to schedule a neurology appointment but learned the earliest availability was January, so they took Knox to an area emergency room, where, they said, they encountered skeptical residents.
“They kept asking for video,” Keylin recalled.
Within a couple hours, a resident witnessed an episode, and Knox was admitted.
Following an EEG, Eric said, doctors told the parents there was “an abnormal reading.” He said they were told that because it was Christmas week, an MRI with sedation for an infant would be difficult to arrange, so a CT scan was performed.
The next day, Dec. 24, they said they were told their baby had a brain bleed, and offered the services of a chaplain.
“They just said, ‘Do you want him to come in and pray over you guys?’” Keylin recalled. “I said, ‘No!’ … I’m trying to be there for him and hold him and he’s crying and crying.”
The couple said a doctor suggested that their decision not to give Knox the vitamin K shot at birth could explain the bleed.
“My wife is looking at me like, ‘did we mess up big time?’” Eric said.
When clotting tests later came back normal, that explanation was ruled out. But by then, they said they felt devastated. Knox ultimately received an MRI, which, along with the possibility of surgery, had prohibited the baby from eating all day.
“We stopped feeding him at like nine in the morning … and he didn’t eat until almost nine o’clock at night,” Eric said. “So it was a miserable experience just sitting there … letting a kid cry.”
Eric said things got worse from there.
“They came back to us and they say that he has tuberous sclerosis” — a rare genetic disorder that causes tumors to grow in the brain.
“You’re facing either a lethal condition or a lifelong condition of misery,” Ghatan said, describing the grim but inaccurate diagnoses the family said they initially received.
Ghatan, who became involved through a colleague who knows the family, said he received the call on Christmas Eve or Christmas Day.
“That’s everybody’s worst nightmare,” he said. “Your child is sick and it’s Christmas Day.”
Reviewing the imaging, Ghatan said he recognized the lesion was, in fact, a rare cortical dysplasia — a congenital malformation caused by neurons failing to migrate correctly during fetal development. While reassuring the Kopfs, Ghatan cautioned that the seizures were serious and required a full epilepsy workup. The couple said the shift in perspectives was a relief.
“Just the way Dr. Ghatan spoke to us … He was a breath of fresh air,” Keylin said.
They met him in person on Dec. 27 at Mount Sinai in Manhattan. The initial plan was medication and close monitoring by Mount Sinai pediatric neurologist Dr. Maita La Vega-Talbott. In late January, Knox developed new seizures. This time, his parents captured one of the episodes on video.
When La Vega-Talbott saw it, she told them they “need to see someone immediately,” Eric recalled. Knox was hospitalize at Mount Sinai. An EEG confirmed infantile spasms — a neurological emergency that can permanently damage brain development if not treated immediately. He was placed on ACTH, a powerful steroid-based therapy with significant side effects, but one that successfully stopped the spasms.
Keylin administered the necessary injections herself.
“That was not fun,” she said.
When the spasms were controlled and seizures localized, doctors proposed what at first seemed unthinkable to the young parents: brain surgery on an infant.
“The best success rates in epilepsy surgery are really on the order of 70 to 80%,” Ghatan said. But doing nothing was worse. “If we don’t do anything, there’s a 3% chance of stopping the epilepsy.”
During surgery in April, Ghatan mapped the child’s brain in real time to avoid damaging motor pathways, and removed the dysplasia without causing paralysis.
“After the surgery … the day after we came home, he started rolling,” Keylin said. “He started moving more.”
Knox is still on anti-seizure medication, has another EEG planned and attends occupational therapy twice a week, Keylin said.
“But now he’s running around.”
Now the Kopfs participate in annual walks for epilepsy. Now the dumpster company Eric Kopf founded rents out purple dumpsters to honor those living with epilepsy. And this Christmas, they got a tree.