Many young adults moving out of their parents’ house for the first time anticipate big adventures ahead: Moving to a new town or state. Late-night parties. Traveling.

When Casey Schorr moved out of his Spokane, Washington childhood home last year at 19, he was looking forward to something a bit more mundane but no less novel, for him — being alone.

From the time he was 15 and had his first grand mal seizure, Casey had to be watched by family or trusted friends every waking moment. His epilepsy, unchecked by any medication he’d tried, was too dangerous for him to be by himself. A seizure could fell him in an instant, and they were coming as often as once a week. His worst one was almost 7 minutes long.

His disease put him in a holding pattern, said Casey, who’s now 20 and living in Lewiston, Idaho. He couldn’t move forward, like he saw his high school friends doing. He couldn’t drive. He lost his after-school job. Moving away from home for college or work seemed like a pipe dream.

“His life was just so limited,” said Casey’s mother, Melani Schorr. “It was like walking on eggshells all the time, being so afraid. He couldn’t live like that forever.”

The prospect of major brain surgery would give most people serious pause. For Casey, the choice was a no-brainer, he said, pardon the pun. He knew the surgery, which would be performed by an epilepsy specialist at Harborview Medical Center in Seattle, was his only option. It wasn’t guaranteed to stop the seizures, but nothing else had worked.

“I was terrified,” he said. “I remember them marking my head with a marker and where they were going to cut, and then the anesthesia and the research group talking to me, and then I don’t remember anything until waking up with 47 staples in my head and a bandage wrapping it up.”

During the procedure, once Casey’s skull was open to the world, his surgeon would tunnel through the brain to reach the deep, buried region where the seizures originated, removing that focal section in the hopes of putting an end to Casey’s epilepsy. But as he made his way to that point, the surgeon removed a tiny piece from the healthy outer layer of Casey’s brain. While Casey was still unconscious on the operating room table, that healthy plug of tissue would be whisked from the OR to a special van that would bring the precious sample across town to the Allen Institute, where a team of neuroscientists was anxiously awaiting its arrival.

With that trip, Casey became something rare: A brain donor who’s lived to tell the tale. His neurons have joined those of less than 200 other patients who have agreed to donate healthy parts of their brain removed during surgery to the Allen Institute research group studying human brain cells, how they work, what makes our brains different from those of other animals — and what might go wrong with brain cells in diseases like Casey’s.

The ‘nightmare’ phone call

Casey’s first seizure struck when he and some friends were doing yard work after school. It was a hot day, and he was wearing all black. His eyes rolled back in his head and he dropped to the ground like a stone, his friends told him and Melani later.

“I got that mother’s worst nightmare phone call: ‘We’re taking your son to the hospital,’” Melani said. “You just panic. It’s so scary.”

After his second seizure, he was diagnosed with epilepsy. When we think of epilepsy, we might think of someone convulsing and falling to the floor — that’s what’s known as a tonic-clonic seizure, sometimes referred to as a grand mal seizure. Casey had those about once a week during the worst part of his disease. Petit mal seizures, or absence seizures, are less obvious. It would look like he was daydreaming, or he’d continue talking, but his words didn’t make any sense, Melani said.

As Casey describes it, the grand mal seizures were a kind of terrifying high, but their aftermath was horrible.

“It’s like a euphoric feeling; you get really tingly. I could see spots in front of my eyes. You get a weird taste in your mouth, and then you black out,” he said. “But then you wake up and you have no idea what’s going on. You wake up and you don’t know where you are.”

All the medications he tried couldn’t touch the seizures; some even made them worse. But if he took one of those drugs after a grand mal, it would stop the aftershock seizures that would otherwise hit every 30 minutes. The drug mostly put him to sleep, Casey said.

Casey’s father died in a mining accident when Casey was 10, so it was just Melani to watch him and his sister. She relied on his friends to keep him safe — they all knew about the medication in his wallet, and they would catch him when he keeled over. But Melani still worried every time he left the house.

“Most people worry about their teenage kids: Are they going to do something stupid? Are they going to get into trouble?” she said. “For me, it was: Is he going to have a seizure in a place where he’d hit his head and die?”

Casey missed a lot of classes. He had a part-time job, but he’d fallen straight on his face on the job during a seizure and had to quit. After more than two years, it was clear to the family that he couldn’t go on this way. It was time for surgery.

The research program

The doctor that was to perform Casey’s operation, UW Medicine’s Dr. Andrew Ko, is part of a network of Seattle-area neurosurgeons who collaborate with the Allen Institute. If a patient agrees to be part of the research study, brain tissue that might otherwise be discarded as medical waste during surgery is instead kept alive in a special fluid and transported to the Allen Institute laboratories, where, for the hours that individual brain cells can stay alive after being removed from the body, the scientists glean as much as they can from these precious few neurons.

“In this type of surgery, we need to remove a small part of the overlying healthy brain. This is usually a small price to pay to be seizure-free,” Ko said. “What is really great about this research program is that it adds the opportunity to advance our knowledge of how the brain works and potentially help others with neurological disease, without incurring any additional risk.”

The tissue comes from patients who have had surgery for epilepsy, like Casey, or brain tumors, but only the healthy part of the brain that is removed to reach the diseased sections are donated. There’s a lot scientists can learn by studying post-mortem tissue from people who donate their whole brains to science after death, but certain experiments — say, capturing the unique details of a neuron’s electrical behavior — need living cells.

“It’s an incredible and exceedingly rare opportunity to get an insight into the dynamic behaviors of our own brain cells,” said Jonathan Ting, Ph.D., a neuroscientist at the Allen Institute who studies human neurons’ electrical behavior using the surgical tissue. “I hope these patients know how meaningful their donations are. This is enabling cutting-edge research that would otherwise be impossible to do.”

When the surgeons told Casey about the research program, he was all for it.

“I just wanted to help anyone who’s struggling with some sort of brain dysfunction that’s putting them behind and stopping them from being able to live their life,” Casey said. That is, anyone like him.

“When you think about how complicated the brain is, and how there’s not a lot of detailed research, it amazes me,” Melani said. She pauses to collect herself. “It makes me emotional that my son could be making such a huge contribution to maybe save somebody else’s life.”

The surgery

The lead-up to surgery was intense, Casey said. His doctors had to induce a seizure under observation so they could see where it originated in his brain — and if the surgery would even work. They kept him awake, flashed LED lights in his face, had him chug energy drinks while wearing dozens of electrodes on his head and chest.

The surgery itself was over quickly, and Casey was only in the hospital for three days after.

Casey wouldn’t know for a while if the surgery had worked, and his doctors had warned him there was a small chance he could have major side effects — memory loss, paralysis, even increased seizures. It was a scary couple of months. He had horrible headaches as he was healing. He was scared to go to sleep alone, in case he didn’t wake up. But after a while, he started to push things a bit, staying up late to see if the sleep deprivation would trigger a seizure, like it used to.

He hasn’t had any of the really scary side effects he was worried about. He has some short-term memory loss and a bit of a stutter now.

He hasn’t had a single seizure since the surgery. It’s been more than two years.

The progress

Meanwhile, his tissue fed into a research pipeline at the Allen Institute. Its eventual payout could be huge: A true cell-by cell understanding of the human brain, in health and in disease.

Access to these human tissues allows scientists to study how the human brain is organized. Typically, researchers could only do such studies in animals used as model organisms for human diseases, like the mouse.

The researchers first began the surgical donation program about five years ago — the same year Casey had his first seizure — and the scientific findings are now starting to trickle in.

By design, the researchers don’t know whose cells they’re studying, so there’s no way to match a specific patient with a scientific discovery.

For example, one team at the Allen Institute is using genes to glean information about the different types of cells that make up the brain, using tissue donated by surgery patients like Casey and postmortem brains from people who had died and donated their bodies to science.

Another group at the Allen Institute used donated tissue to find subtle but intriguing differences in the way human and mouse neurons of the same type send and receive electrical signals, using living cells from both epilepsy and brain tumor patient-donors.

Ting and his colleagues are using the tissue to insert designer genes into live human neurons to light them up in glowing colors under a microscope — a technique that lets researchers study very rare cell types and could one day lead to new gene therapies for brain diseases.

“By their precious gift of brain tissue, patients like Casey are enabling us to learn about the secret lives of these cells in a completely new way, to ultimately better understand our mind in health and disease,” said Christof Koch, Ph.D., Chief Scientist and President of the Allen Institute of Brain Science.

As for Casey, once he recovered from surgery and stopped holding his breath waiting for the next seizure, it was time to play catch up.

Three years might not sound like much time to lose, but for an 18-year-old, it felt like a huge chunk of his life. He got his driver’s license last year. He enrolled in an associate degree program in Idaho. He got a job as a machinist.

These days, he relishes quiet moments in the apartment where he lives on his own, tinkering with his dad’s old truck in his spare time between classes and work, driving his own car for the first time.

“The surgery has really changed everything,” Casey said. “Oh man. It took me a long time to be able to realize that I have my own life now.” — written by Rachel Tompa, Ph.D.

Rachel Tompa is Senior Writer at the Allen Institute. She covers news from all scientific divisions at the Institute. Get in touch at rachelt@alleninstitute.org.