My nephew, David Barry, is only eight years old, but I already know how he will die. It will start suddenly. His arms and legs will jerk outward; in lighter moments, his parents call this pose his “Superman.” His mother—my older sister, Tami—will look at her black and silver Timex Ironman watch. She’s never without it. Tami times every seizure because she never knows if it will last a few seconds or a few minutes. It’s the long ones she worries about.
After several seconds, David’s body will curl into a C, his arms and legs will flail violently, and his mouth will be pulled back tightly at the corners. His eyes will twitch and roll back into his head. His muscles’ vigorous spasms will suck oxygen from his system. His breathing will become irregular. The full-body convulsions, known in the medical community as tonic–clonic seizures, can induce vomiting, so Tami will lay him on his right side so he doesn’t aspirate. She will be calm. These massive seizures—or clusters of them—happen at least every other day.
At three minutes, Tami will prep the Midazolam, a sedative typically given before general anesthesia in surgery, which she can give David via nasal spray. She prefers to use it instead of Diastat, which has to be administered rectally and costs 20 times as much as Midazolam. These medications come with serious psychoactive side effects—they compromise cognition, perception, even consciousness—but as Tami and her husband, Dwight, darkly joke, when you’re trying to keep your kid alive, you’re not especially concerned with whether or not he knows his own name.
At five minutes, she will give David 0.7 milliliters of Midazolam. She’ll still be calm. As David has grown older, using these rescue meds has become a near weekly occurrence. It will be quiet. David won’t cry. He can’t: His jerking, contorted body is too busy fighting itself.
At six minutes, when the Midazolam hasn’t taken effect, David’s face will pale. The area around his mouth will turn blue. Tami will blow gently on his face, which sometimes stimulates breathing. If it doesn’t, she will give him rescue breaths, about four a minute depending on his breathing pattern. When her watch says it’s been nine minutes, she will administer another dose of Midazolam, and her own heart rate will begin to climb. She can only give David one more dose. The powerful sedatives stop seizures by slowing the central nervous system. That means they also affect involuntary activities like breathing, which is why any more than three doses of Midazolam or two doses of Diastat in 24 hours require a trip to the emergency room, where doctors can give David more and stronger sedatives with proper respiratory support.
Between rescue breaths, Tami will scan the room for her cell phone. With David still seizing and breathing irregularly at 12 minutes, she will prep her last dose of Midazolam. A minute later, she will give it to David, grab her phone, and dial 911. The ambulance usually takes 10 minutes to get to their home in Edmonds, a northern Seattle suburb. When the ambulance arrives, David will still be seizing, struggling to breathe, his fragile brain battered by a storm of electrical pulses, his own body suffocating him. His doctors have warned Tami about this day: the day the Diastat and Midazolam will lose their effectiveness, the day the drugs will fail to stop the seizure, the day there will be nothing left in the arsenal.
The doctors and Tami and Dwight have known this day was coming for years. Small shudders gripped David’s body just hours after he entered the world on September 4, 2005—the first signs of catastrophic epilepsy wrought by a suspected mitochondrial disorder. These intractable seizures have stolen any chance David had at normal. He cannot see. He cannot hear. He can’t hold his own head up. Today, at age eight, he has the developmental abilities of a three-month-old. He eats through a tube surgically implanted in his stomach and vomits so often he weighs just 40 pounds. Every day, between 10 and 20 seizures ravage his shrunken body, sometimes more. Someday these seizures will also take his life. In the face of the inevitable, Tami and Dwight desperately seek ways to ease their son’s suffering—to make the time David has left as painless as possible—and to put off the end they know is coming, if only for one more day.
Thirty-five miles northwest of Colorado Springs, 13,852-foot Crystal Peak rises unremarkably near more storied Tenmile Range summits such as Quandary Peak and Peak 10. But this stony mountain held special meaning to the area’s first residents: The Ute Indians believed Crystal Peak to be a spiritual place. It was here, according to author and historian Celinda Reynolds Kaelin, members of the tribe’s ceremonial circle gathered sacred stones and carried them to Pikes Peak, where one person delivered them to the summit during a four-day vision quest.
Today, in the shadow of Crystal Peak, a new kind of healing ground has emerged: the Stanley brothers’ cannabis grow facility. Amid a rolling high-country landscape, Joel, Jesse, Jon, Jordan, and Jared Stanley cultivate roughly one acre of marijuana inside two hand-built greenhouses, making the brothers owners of one of the largest medical marijuana grow operations in the state.
The clean-cut Stanley brothers are unlikely pot-growing pioneers. A large, devout Christian family (seven brothers, four sisters), the Stanleys moved from Oklahoma to Colorado in 1994. Their father left in 1997, and their grandmother moved in to help hold the family together. As an only child, their mother, Kristi, wasn’t sure how to raise 11 children, but she let scripture guide her, regularly repeating this verse from Philippians: “Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves.” That mantra binds the brothers all these years later.
In 2008, the eldest Stanley brother, Josh, established Budding Health, one of the first medical marijuana dispensaries in Denver. He called his brother, Joel, who had been working in the Texas oil fields as a fluids engineer, to gauge his interest in the industry. “At first I just laughed at him,” Joel says. “I thought medical marijuana was a joke.” Upon meeting a few of Josh’s patients weeks later, though, Joel reconsidered. Many were suffering from cancer, wasting away because of nausea and lack of appetite. “No one thinks of the munchies as being medicinal, but if you’re going to die because you can’t eat, then they’re extremely medicinal,” Joel says. “I changed my tune.”
A few months later, in the summer of 2009, Joel, Jesse, Jon, Jordan, and Jared pooled their money to buy their first full grow setup. They started with six lights in a Fort Collins basement. As caregivers under Colorado’s medical marijuana laws at the time, the Stanleys were allowed to grow six plants per patient. The brothers wholesaled their product to Denver-
area dispensaries and provided a concentrated THC oil to their patients for free. They poured profits back into the crop and took on more patients.
One of the Stanleys’ first clients was their cousin Ron Fortner. A stage IV pancreatic cancer patient, Fortner died just six months after the Stanleys started cultivating marijuana, but in that short time he helped advance the brothers’ interest in a promising field of cannabis research: cannabidiol. Most people are familiar with the plant’s major psychoactive compound—tetrahydrocannabinol (THC); fewer people know about cannabidiol (CBD), one of the other 400-plus compounds in cannabis. In searching for ways to help their ailing cousin, the Stanleys discovered scientific literature suggesting CBD had antioxidant and neuroprotectant properties and the ability to help reduce inflammation, ease pain, and even, in some lab studies, shrink tumors. Most cannabis plants, though, have fairly low levels of CBD; over the years, they’ve been bred to have more THC. The Stanleys figured the reverse—high CBD, low THC—must also be possible, so they began to tinker with crossbreeding.
Although their grandmother had been a florist and their grandfather a farmer, none of the brothers had a formal background in horticulture or botany when they started cultivating cannabis. Not long into their growing endeavor, however, the Stanleys met an older gentleman who’d spent his career as the head of several commercial tomato greenhouses. “We’d buy him coffee,” Joel says, “and he’d tell us everything he knew.”
By 2011, the Stanleys had bred a cannabis plant with more than 15 percent CBD and less than half a percent THC content. But for what purpose, they weren’t sure. Most medical marijuana cardholders didn’t want it; it couldn’t get you high, which was why the brothers nicknamed the strain “Hippies’ Disappointment” (among other names, such as “The Future”). By then, after a few years spent in basements, barns, and warehouses, the brothers had established their Teller County grow site. Inside the greenhouse, they kept a few Hippies’ Disappointment plants to treat cancer patients. The Stanleys knew the strain had potential for something more, but what? The answer came that winter, when they met a Colorado Springs mom named Paige Figi.
In early October 2006, my phone buzzes on my office desk. It’s my dad. I silence the call. Still finishing up editing projects in preparation for a work trip to Vancouver, British Columbia, the next day, I figure he can wait. I set the phone down as the electronic chime for a voicemail sounds. I hesitate. Might as well listen to his message, I think.
Hey Kasers, I’ve got some news about David. It’s not good…call me back when you get a chance.
I draw a shaky breath. We’ve been waiting for some kind of answer for almost a year, since David was diagnosed with infantile spasms at two months old. I walk out into the sunshine cooking the office’s rooftop deck and dial my dad.
“They got the results of David’s MRI today,” he says. “It revealed he’s missing part of his brain—most of the corpus callosum, the part that helps the right hemisphere talk to the left. They don’t know why—it could be a symptom of his underlying condition—but they don’t expect him to last more than a couple of years.” He sighs, almost inaudibly.
I stop pacing and pause in front of a large potted plant desiccated by the Indian summer and fixate on its shriveled and bowed branches. Beneath the sun, I feel the hope we’d clung to since David’s initial diagnosis evaporate in the flatness of my father’s voice and his slow, unsteady exhale.
At about the same time, more than 1,300 miles away in Colorado Springs, Paige and Matt Figi’s nightmare was also beginning, although they didn’t yet know it. On October 18, 2006, Paige gave birth to twin girls, Charlotte and Chase. For three months, the Figis reveled in the joy of their growing family (they also had a two-year-old son, Maxwell). Then Charlotte—“Charlie,” as her family calls her—had her first seizure. And then she had more and more and more—at least one a week. By 18 months, she had started to regress: She stopped talking, walking, crawling. At two, she was having up to 20 seizures a day. Finally, when she was two and a half, after a $7,000 genetic test, Charlotte was diagnosed with Dravet syndrome, a rare disorder that accounts for a portion of the more than 100,000 American children who suffer from severe epilepsy.
Charlotte’s doctors set out to find a drug that would help control her seizures. First they tried Keppra, an antiepileptic drug (AED) with side effects that can include drowsiness, weakness, throat irritation, memory loss, high blood pressure, and severe mood swings. (In fits of “Keppra rage”—sudden, unreasonable outbursts of anger and aggressive behavior—children sometimes attack their parents or harm themselves.) Next came Depakote, which can be so damaging to the liver that doctors typically run blood tests every three to six months to monitor the organ’s health. By the time they tried Trileptal, Paige was losing hope. The doctors had told her that after a child failed to respond to three antiepileptic drugs, her chance of responding to any others was less than one percent. The Trileptal didn’t work. Neither did acupuncture, herbal supplements, craniofacial therapy, or any of the other “alternative” remedies Paige and Matt, an Army Special Forces staff sergeant, sought to save their daughter.
By the time she was five, Charlotte had tried more than a dozen antiepileptic treatments. They all failed. The next option was an antiseizure medication for dogs. The Figis’ cherubic daughter was so frequently plagued by seizures that she couldn’t sleep. She couldn’t eat or drink. Like my nephew, David, she had a feeding tube, and at five, Charlotte was functioning at the same level as a one-month-old. Her doctors said there was nothing more they could do; they weaned her off her last drug. Her parents signed a do-not-resuscitate order. “She had pneumonia and was on oxygen,” Paige says. “It was looking very, very bad.”
In 2011, on the eve of another deployment to Afghanistan, Matt said what he feared might be a final goodbye to his five-year-old daughter. But even when he was nearly 8,000 miles away, Matt continued searching for a reason to hope. Before he left, the Figis had heard about a father in California using a strain of marijuana to treat his son. While Matt was overseas, he found a moving YouTube video of the father and son. “Matt called me on the satellite phone,” Paige remembers. “Charlotte’s seizing, and he’s listening to her scream, and he’s pushing me to understand: ‘We live in a legal state. You’ve got to try this.’ ”
At first, Paige said no. Too many times she’d been gored by the horns of disappointment. The pain was just too much. Not again, she thought, not again. But then she’d look at her seizing daughter and wonder, What if I don’t try and she dies? What if?