When the drug arrives at Cook Children’s Medical Center, in Fort Worth, Danelle Morgan, the hospital’s investigational drug service administrator, gets a text message from the receptionist at the front desk alerting her to the shipment’s arrival. A security camera mounted on the ceiling monitors every movement made with the drug, from its delivery by UPS or FedEx to the moment Morgan, joined by a member of the hospital’s security team, picks it up.

The drug, so heavily guarded it has a code name at the hospital, then travels along a route carefully mapped out by Cook Children’s head of security, a route he selected because of the number of security cameras—at least seven—that Morgan and the security guard pass as they transport the package. Along the way, there are multiple checkpoints where Morgan has to swipe her badge to enter certain hallways or elevators. Once Morgan and her security detail arrive at the drug’s final destination—a pharmacy in Cook Children’s specialty clinic—they open the Omnicell SecureVault, where the hospital stores narcotics like morphine. It takes two people to open the vault, which is safeguarded by both a pass code and a fingerprint reader. An additional security officer watches the entire process to ensure that every bottle of the drug in the package ends up in the vault.

The trip from the receptionist’s desk to the pharmacy isn’t far—maybe a two-minute walk—but the methodical delivery of the shipment to its final destination takes fifteen to thirty minutes. To an ordinary person, these extraordinary precautions would signal that the hospital is dealing with a highly addictive or dangerous substance. And when some people learn that this particular substance—cannabidiol, known as CBD oil—is a compound derived from marijuana and is classified by the FDA and DEA as a Schedule I drug like LSD or ecstasy (that it has “no currently accepted medical use”), the measures that the hospital is required to take sound more reasonable, if slightly hypervigilant.

Danelle Morgan of Cook Children’s Medical Center shows where the hospital keeps its supply of CBD oil, a form of medical marijuana that researchers are currently testing as a treatment for intractable epilepsy, in a secure vault along with the most powerful narcotics in the pharmacy.
Danelle Morgan of Cook Children’s Medical Center shows where the hospital keeps its supply of CBD oil, a form of medical marijuana that researchers are currently testing as a treatment for intractable epilepsy, in a secure vault along with the most powerful narcotics in the pharmacy.

Photograph by Leslie Boorhem-Stephenson

CBD is technically medical marijuana, but this particular type is so low in THC, the psychoactive chemical in marijuana that gets people high, that a person could ingest a gallon of the stuff and not feel even a little bit mellowed out. Still, the use of medical marijuana to ease various health problems remains so controversial that despite being legal in 23 states and the District of Columbia, the federal government had banned the drug—until recently. In late 2014 Congress quietly tucked a provision into a federal spending bill that prohibits drug agents from raiding licensed medical marijuana dispensaries.

This provision was a big win for medical marijuana advocates. But there are other roadblocks for people who need these drugs. Without FDA approval, companies can’t make any medical claims about their cannabis products. And with no regulation, customers who need those drugs to be high in CBD can’t be sure that that’s what they’re getting. Cook Children’s is part of an international study that could change all that. The hospital is participating in one of the first FDA-approved clinical trials of CBD oil. It’s designed to test the drug’s effectiveness in treating a condition afflicting its ten participants: children ages two to fourteen who have a debilitating form of epilepsy called Lennox-Gastaut Syndrome, or LGS, which causes them to suffer up to 150 seizures a day.

This is a pivotal moment for the FDA. The agency does not consider marijuana to be “medicine,” but one way to change that is through carefully conducted clinical trials. The study that Cook Children’s is a part of marks the first time the FDA has considered the potential medical benefits of CBD in treating intractable epilepsy. Depending on the results, the landmark study could take the agency one step closer to approving what could be a transformative tool in controlling a condition that affects hundreds of thousands of Americans.

Jennifer Huffman never pictured herself becoming a medical marijuana activist. In the past, when she heard people talk about legalizing the drug—for recreational or medicinal purposes—the 28-year-old Corsicana native, who lives in her hometown with her husband, Billy, would shake her head and declare that she didn’t believe marijuana did anyone any good. But that was before her son Jaxon was diagnosed with LGS.

In 2011, when Jaxon was two and a half months old, he had his first seizure. Jennifer, who has worked as a home health nurse, immediately recognized what was happening. In her line of work, she had come across “infantile spasms” before and knew that though it sounds relatively innocuous, it’s actually a particularly brutal form of epilepsy. When people hear “epilepsy,” they imagine the grand mal seizures often depicted in the media. But children who suffer from LGS, a rare and severe type of childhood-onset intractable epilepsy, have seizure symptoms that can be much more subtle—those that are “tonic,” when the limbs stiffen with no warning, or “atonic,” when the head drops suddenly. These seizures happen with terrifying frequency—anywhere from 30 to 150 times a day—and for most patients there is no treatment that seems to work for a sustained period of time. Children who develop the disorder early are at an extreme disadvantage; the condition causes severe neurological damage. Jennifer knew all this, but familiarity with LGS doesn’t make it easier to live with.

Jaxon suffers from cluster seizures, which occur as a group. He experiences twenty to thirty clusters a day, and each cluster can include between five and one hundred seizures. They are so self-contained that there isn’t much Jennifer or Billy can do but let them pass and try to keep Jaxon from hurting himself. In some ways, Jaxon is lucky. When he was first diagnosed, he was prescribed phenobarbital, a time-tested medication used to treat epilepsy. The drug was effective for a few months, allowing Jaxon to develop without the trauma of seizures for a short time. Not every child gets that sort of respite. But at five years old, Jaxon doesn’t sit up on his own, much less walk. His food is pureed. His verbal skills are basically nonexistent.

 

Rikki Adan, another participant in Cook Children’s clinical trial, suffered more than thirty seizures a day before he joined the trial. He wears a helmet to protect against injury.
Rikki Adan, another participant in Cook Children’s clinical trial, suffered more than thirty seizures a day before he joined the trial. He wears a helmet to protect against injury.

Photograph by Leslie Boorhem-Stephenson

 

Despite these limitations, Jennifer and Billy do what they can to treat Jaxon like any other little boy. He gets happy when he sees Mickey Mouse, so they buy him toys of the cartoon character. They make him the dishes he likes best, like spaghetti and mashed potatoes. To them, his love of sweet tea proves that he’s “a Texas boy at heart.” They dote on him—as do his two siblings, Mason, who’s seven, and two-year-old Jaylea. The three dress in matching Christmas outfits. They all laugh when Jaylea plays with Jaxon, jumping and shouting “Boo!” to get him to giggle.

Jennifer and Billy do all they can to be a normal family, though it’s difficult under the circumstances. Billy works long hours as a paramedic—24 hours at a time—and his two consecutive days off are spent caring for the children. Jennifer works regular hours during the week as the regional director for a home health care company and when their work schedules overlap, Jaxon’s maternal great-grandparents sometimes help with child care. But the couple tries not to impose too often on family; Jaxon’s condition can be stressful for people who don’t live with it every day.

Even if the Huffmans try to make do with few complaints, they go through phases. Sometimes they’re hopeful and patient. Sometimes they doubt everything and feel utterly helpless. When Mason asks, “Will Jaxon ever be able to walk or run or play with me?” Jennifer’s answer is measured. “We don’t know. We just need to play with him the way he knows how to play with us.”

In 2013 Jennifer’s family told her about a special report they saw on CNN. In it, Sanjay Gupta interviewed Paige and Matt Figi, a couple from Colorado whose story sounded like the Huffmans’. Constant seizures plagued their toddler daughter, Charlotte, and eventually the child was diagnosed with Dravet Syndrome, another form of intractable epilepsy. After months of trying various drugs and diets, the Figis learned that some patients with Dravet were being successfully treated with CBD. At that point, Charlotte was experiencing three hundred seizures a week, and the Figis were desperate. Like Jennifer, Paige was someone with a lifelong opposition to marijuana. And like Jennifer, the condition plaguing her child made Paige willing to consider anything, even cannabis, if it meant reducing the seizures. The Figis found a Denver dispensary that had a marijuana strain with high levels of CBD and low counts of THC. After the Figis administered the oil to Charlotte, her seizures dwindled to three or four a month.

Nearly everyone Jennifer knew who had seen the CNN segment urged her to try to obtain the drug—“You need to take that baby to Colorado!” So in September 2013 Jennifer assembled all the information that she could find on CBD and its purported use in treating intractable epilepsy and took it to an appointment with Jaxon’s doctor, Scott Perry at Cook Children’s. “Please don’t think I’m crazy,” she told him as she asked about the cannabis treatment, quickly adding, “I promise I would never want to do anything that would harm my child.”

“Let me guess,” he replied. “You want your child to be put on CBD. What took you so long to ask?”

But the Huffmans live in Texas. They couldn’t run to the local dispensary and buy the drug for Jaxon. It seemed that the family might not have a chance to try the treatment—not without leaving their home. That is until last fall, when Cook Children’s, working with GW Pharmaceuticals, a company that has been sponsoring research on the anti-convulsive effects of cannabinoid compounds, entered into the FDA-approved trial. It’s a double-blind placebo-controlled trial, which means that some of the participants are receiving CBD oil at various dosages and others are taking a placebo, and no one—not the patients and their families, nor their doctors—knows which group is which. The double-blind methodology is meant to prevent families who might have preconceived notions about the drug from forming biases that could distort the way they report its effects, consciously or subconsciously.

Jaxon began participating in the trial, and, like the nine other families involved, the Huffmans were not told if Jaxon was receiving CBD or the placebo. All they know is that, so far, they haven’t seen any improvement in his condition. That’s not a shock to Jennifer and Billy. They’ve tried just about every drug there is, but none has worked for long or significantly decreased his seizures.

As the trial unfolds, Jennifer has started to temper her expectations and to look for other bright spots. So far whatever Jaxon is taking isn’t directly helping him, but even if it doesn’t stop her son’s seizures, she reminds herself that the research will help many other kids. Billy, on the other hand, continues to be hopeful about how the drug could change their lives. “If this medicine could change anything, I wish it was that he could communicate with us.” But Jennifer sets her sights a bit lower. “If we could even see a decrease in the number of seizures,” she says, “I’d consider it successful.”

In a clinical trial like the one Cook Children’s is a part of, researchers are looking for a significant reduction in seizures for subjects taking the oil compared with those on the placebo. If that happens, and there are no major adverse side effects, the drug will then be deemed effective enough to warrant further research. And while scientists have been studying the effects of cannabinoid compounds on epilepsy since the seventies, there is still no definitive answer to the multibillion-dollar question: Does CBD oil work?

That is why this particular trial could have far-reaching consequences. There have been few CBD drug studies on humans, and no monitored, FDA-approved, double-blind, placebo-controlled trial has ever focused on how CBD oil affects intractable epilepsy. In its best case scenario, if the study finds that the drug is effective, it could lead to FDA approval. The outcome relies on the accuracy of reporting and monitoring, hence the elaborate methodology. Controlling for placebos is especially important in a trial where desperate parents are emotionally invested and would like nothing more than to believe the reports about CBD being the miracle drug that its proponents say it is. Since patients can benefit from any form of treatment (a phenomenon known as the placebo effect), it must also be a double-blind study—neither the patients nor the researchers know who is on the real drug. This is the only way to determine how well CBD actually works.

Perry, who is Cook Children’s lead neurologist in the study, has spent ten years researching the neurological bases for intractable epilepsies. As a patient care doctor, he’s adored by the parents of the children he sees, and as a researcher, his articles about cutting-edge treatments for the condition have been published in prestigious medical journals. When I ask Perry if CBD works, he’s hesitant to give a definitive opinion about the drug while the trial is still ongoing. One thing he is willing to say, though, is that CBD is not a miracle drug. “We think it works,” he tells me. “I’ve seen people who have gone from horrible to a lot better, and I don’t think they’re being biased and seeing what they want to see. Their kid was having a hundred seizures a day, and now they’re down to maybe a couple a week. But what I think we have is a somewhat biased representation of CBD.”

That’s in stark, if realistic, contrast with the way the drug is talked about by its advocates. There are countless testimonies online from people who write at length about the way CBD has changed their children’s lives, and those stories, Perry says, are almost certainly all true. Still, he cautions against an inadvertently prejudiced perception of its effectiveness. “Right now, the stories you hear are the success stories,” he says. “But there are others who have gotten CBD and have not changed at all. So when it’s all said and done, I think we’ll find that CBD is not the miracle cure-all for all epilepsies.”

This makes sense. Not all epilepsies are the same, and thus different treatments work differently on different forms of the condition. Then there’s the fact that the brain has a tendency to build tolerances to new drugs. That’s why many treatments work at first. Most successful three-month trials of seizure medicines show that a drug is effective during the course of treatment: at least 50 percent of the patients have their seizures reduced by at least 50 percent, and roughly 10 percent of them end up seizure-free. Those numbers may seem good, but as Perry explains, “intractable epilepsy has a tendency to respond to a new medication very well for a little while, and then go right back to where it was. The brain gets tricked, then figures out a way to work around it. It doesn’t necessarily mean it’s going to work long term.”

The placebo-controlled part of this trial lasts only three months, enough time for doctors to collect important information about dosages and how the medicine works. But the study’s “open label” design allows participating patients to either continue using the drug (if they had been receiving it) or, for patients receiving the placebo, to start the true treatment. It’s a good deal for everybody; the volunteers get to stay on a treatment that may be giving them positive results, and the pharmaceutical company gets months or even years of reporting on the effectiveness and safety of the drug.

Even with years of research to come, there’s a sense of urgency in Perry’s work. Intractable epilepsy is a brutal assault on the brain. It manifests through severe seizures that curtail normal cognitive development, and the sheer number and strength of the tremors also impedes healthy physical growth. Even though it’s primarily a neurological condition, it ravages the entire body. “The sooner you’re able to get the seizures under control, regardless of the underlying etiology, you’re going to get a better outcome,” Perry explains. “It might not be normal development, but it’ll be much better.”

When I visited with Perry, the results of the trial were still forthcoming, but he was willing to share one bit of promising news: it appears CBD has multiple mechanisms of action. “Most drugs predominantly target one thing and CBD doesn’t work on the receptors that we know of for marijuana, but it works somewhere else. We don’t know exactly why it works, but the fact that it’s a multiple-target drug with multiple modes of action makes it different from other [seizure] drugs,” he explains.

Perry is patient in answering my questions and thoughtful giving his answers, but at the end of our interview, he sighs. “Well, I’m off to see another kid with intractable epilepsy,” he says, suggesting that, at times, the profound degree of his patients’ suffering wears on him. It also helps explain why he’s hesitant to get overexcited when talking about a treatment that he’s currently in the middle of testing.

The reality of LGS, Dravet Syndrome, and other intractable epilepsies is that they stunt development, cause severe pain, and can increase a person’s chance of death fifteen-fold. And even if the CBD study does end up showing that it’s effective for some conditions, there will likely still be a lot of patients in his office that it doesn’t help. “It’s another tool that does work for some people,” Perry says. “So what we have to figure out now is: Why does it work for some people? Who are those people? And if it doesn’t work for other people, why didn’t it work? Maybe it needs a different combination. Maybe it needs THC—who knows? I’ve got people out there on pretty much every drug who will say that it was a miracle, because it worked for their child, and plenty of others who will say that it’s worthless, because it didn’t do anything for them. And that’s probably how this will end up in the end.”

Since the trial started, Vanessa Castro’s fourteen-year-old daughter, Jordyn, has seen a remarkable decrease in seizures.
Since the trial started, Vanessa Castro’s fourteen-year-old daughter, Jordyn, has seen a remarkable decrease in seizures.

Photograph by Leslie Boorhem-Stephenson

Vanessa Castro smiles a lot. This disposition serves the thirty-year-old well in her job as an underwriter at a local bank in Fort Worth. Her effortless display of positivity, coupled with poise and confidence, probably make it easy for her clients to tell her their financial circumstances.

But it’s not just a veneer. This sunny outlook follows her home to her fourteen-year-old daughter, Jordyn, who started having seizures when she was three months old and was diagnosed with LGS when she was eight. It’s hard for doctors to pinpoint why many of the kids who have LGS came down with the condition, but Vanessa thinks she knows why Jordyn started having infantile spasms. Vanessa fell down a staircase while holding three-month-old Jordyn, who began experiencing tremors the next day and had more than twenty seizures over the following 48 hours.

It was a hardship that compounded an already-challenging situation for the young mother. Vanessa and her mother, whom she lived with at the time, eventually found Child Care Associates, a local nonprofit that helped her secure care for Jordyn while Vanessa was in high school. Finding daycare that will take a child with special needs is tough, so Vanessa considered herself blessed to have found the organization (she later joined the board). It helped provide some stability in her home life, and stability is something she has long fought to establish. After high school, she started working at a bank, which led her to another banking job where her managers allowed her to work around her class schedule as she completed an online degree from Texas A&M. This solid foundation stands in contrast to how things were when she was younger. Before she had Jordyn, life at home was turbulent, and she and her little brother, Justin, leaned on each other heavily throughout childhood, a habit that has continued into their adult lives. Justin, a big friendly guy, works full-time as Jordyn’s care provider, saying that it’s his way of paying Vanessa back for how she took care of the family when they were kids, helping to manage things while their mom worked. Together they navigate the difficulties that come with Jordyn’s condition with relative aplomb.

But with LGS, stability lasts only so long. When Jordyn was twelve, she had such a bad grand mal seizure that she broke her arm. Jordyn’s doctors told Vanessa that her daughter was fortunate, but the severity of the seizure worried them. They feared another such episode could cause Jordyn to break her neck. The doctors recommended surgery to see if they could pinpoint where in the brain the seizures were coming from. When Vanessa asked about the risks, she was told her there was a 3 percent chance of a stroke. She agreed to the procedure.

Jordyn had a stroke soon after the surgery. She was already developmentally stunted, because of the neurological damage that the seizures had inflicted—she’s about where you’d expect a healthy eighteen-month-old to be—but things got harder after the stroke. She doesn’t talk, and while she could walk a little before, now she can’t walk at all. Jordyn is also getting older and soon she may be too big for Vanessa, a small woman, to take care of, even with the help of her brother.

Vanessa spends her days and nights worrying about that day, but she consoles herself by remembering that she and Jordyn have overcome tough odds before. When doctors told Vanessa that Jordyn wasn’t going to live past a certain age, Jordyn made it to four, then seven, and now doctors have stopped giving her a number. In a way, for Jordyn to reach a point at which she would need professional care would be an accomplishment. Today the teenager is participating in a trial where she has seen her seizures drop from between fifty and one hundred a day to less than half a dozen. Some days are seizure-free.

Whether or not Jordyn has been receiving the medication or the placebo, if what she is taking helps, the availability of the real drug after the initial trial means she’s one of the lucky few in Texas who will have regular and consistent access to CBD for the time being. But success for her and the other participants in the study still doesn’t provide an answer for another looming question: How will the thousands of children in Texas who suffer intractable epilepsy ever be able to obtain the drug without moving out of the state?

Marijuana has a long, controversial history in America. For years, the national dialogue about marijuana was inextricably linked to the War on Drugs. Weed even has that most villainous appellation, one it just can’t seem to shake: the gateway drug. But various campaigns by marijuana-law reform activists have people viewing the drug with a more generous eye. A 2015 Pew Research poll found that over half of Americans support legalization, a 21 percent increase from a similar poll conducted in 2006. This general shift seems to be mirrored in Texas, where a poll conducted in 2015 by the Texas Lyceum found that 46 percent of Texans support legalizing the drug, up from 33 percent just four years ago.

Yet the stigma is hard to shake. Especially in Texas, where even our liberty-loving politicians who have run the state for decades have refused to express support for legalization of the drug for any purpose. As recently as the 2014 election, major Republican candidates were strident in their opposition to any change in Texas’s legislation of controlled substances. At the time, would-be governor Greg Abbott said he supported Texas’s current drug laws. Dan Patrick, who was running for lieutenant governor, called changing marijuana laws “a nonstarter,” while his opponent, then–Lieutenant Governor David Dewhurst, said, “I would not legalize it. I would not decriminalize it.” It’s politics that has stymied most efforts at passing meaningful marijuana-law reform here and across the nation.

This kind of opposition is typically directed at complete legalization or decriminalization—only four states have legalized recreational marijuana, though using the drug remains a federal offense—but people are often more empathetic when it comes to discussing medical marijuana. In that 2015 Pew poll, of those who supported legalization, 41 percent said it was because of the medical benefits of the drug. Numerous medical organizations—including the National Institute on Drug Abuse, the American Cancer Society, and the American Academy of Pediatrics—support cannabis reform. There’s also increasing anecdotal evidence that applications of controlled dosages help relieve many chronic conditions, things like chemotherapy-induced nausea, glaucoma—and seizures in children with epilepsy.

Despite hard-line stances against marijuana reform, there have been legislative indications that our state government’s views could be softening. During the most recent session, the Texas House Criminal Jurisprudence Committee surprised the country when it approved one bill that would decriminalize marijuana and another that would legalize recreational use. Neither bill made it past the Calendars Committee, but another one did: the Texas Compassionate Use Act, which legalized cannabis oils as a treatment for chronic medical conditions. Republican senator Kevin Eltife, from Tyler, sponsored Senate Bill 339 after a family in his district whose eight-year-old son suffers from intractable epilepsy brought the issue to his attention. “The bottom line is that, when you meet with the families and the children who have this, you realize that it’s their only hope,” Eltife says. “That’s what helped us pass this legislation. The families’ testimony before committee was very powerful. I was in the Senate for twelve years, and this is one of the pieces of legislation I’m most proud of.”

Eltife’s bill was signed into law by Governor Abbott in June, which astonished even the now-retired senator; Capitol observers had feared that the governor might veto the bill, and Eltife had described the possibility of passage as a “long shot.” But Abbott likely signed it only because the legislation is so narrowly tailored. The law allows doctors to recommend CBD oil to patients with conditions like intractable epilepsy, and Texas dispensaries will only be able to offer only non-smokeable doses that are less than 0.5 percent THC and at least 10 percent CBD. Of course, there are no Texas dispensaries for medical marijuana right now. And because the law contains so many restrictions, it’s unlikely that entrepreneurs will start opening dispensaries just to serve a customer base that maxes out at around 150,000—the estimated number of Texans with intractable epilepsy.

Those who hoped for a change in the status of medical marijuana to treat a variety of other conditions were disappointed, but Eltife notes that, had the bill been written to include other constituencies, like veterans and the chronically ill, it likely wouldn’t have passed. The Texas Compassionate Use Act may not be perfect, even for the people it’s designed to help, but there’s hope in even a symbolic victory.

Rikki Adan was always going to be a change-of-life baby for his parents, Sandy and Jose, of Fort Worth. Sandy was pregnant with him when she was 38 years old and Jose was 42, and they already had three kids, the youngest nine years older than Rikki. So while the Adans were prepared to alter their plans to accommodate the newest member of the family, they didn’t expect their lives to be so radically altered.

Almost three years ago, when Rikki was three months old, he started having tremors. Sandy had planned to wait until a doctor’s appointment that had already been scheduled for a few days later to take him in, but then he started vomiting even though he wasn’t running a fever. She called an ambulance and he was taken to the emergency room, where he was diagnosed with infantile spasms. She was initially relieved—“spasms” didn’t sound serious to her—but she quickly learned that it’s much worse than it sounds. She kept hoping Rikki would grow out of it; the doctors kept telling her that he probably would not. They gave her a pile of pills for him to take and she panicked—“I only give my kids Advil,” she says—but she relented when the doctors stressed that he could die. Despite attempts at treatment, this specter of death hangs over Sandy. Rikki has more than thirty seizures a day, and every time he has one, she fears it might be the one that kills him. “Everything stops every time I see him drop,” Sandy says.

When he was officially diagnosed with LGS, having a clear answer brought the Adans little comfort. And when Sandy began to research the condition, even that thread of comfort weakened. There were all sorts of recommendations online—street marijuana, switching to an organic diet—but Sandy stopped reading forums because of how conflicting those suggestions could be. Even when the information came from a reputable source, she just kept seeing the word “death.”

Contending with this avalanche of questionable advice and alarming warnings is a familiar story to anyone dealing with a condition like Rikki’s. Not only is there the ever-present dread that parents like Sandy and Jose experience but people have to learn to take care of a child who can’t walk or talk, or who has to be force-fed, or who might have four seizures in an hour. The condition’s effects ripple through every aspect of a family’s life. In Sandy’s case, she worked as a housekeeper at Harris Methodist Hospital while studying to become a certified nursing assistant. But when Rikki was born, she had to give up her studies, and Jose, a mechanic, had to miss a lot of work to take care of things around the house. They, like a good number of families who deal with children suffering from a chronic condition that requires expensive caretaking and compounding medical bills, have been in increasingly dire financial straits since Rikki’s diagnosis.

The Adans spent much of last year struggling to pay rent. The apartment complex where they lived had been working with them, but in July, when they got too far behind, Sandy called Catholic Charities of Fort Worth to ask for help in avoiding an eviction. When she told the man who answered the phone about their situation, he showed up at the complex in person and wrote them a check. In November a friend of Sandy’s offered them a house on the south side of Fort Worth that they could rent at a discount, paying roughly two thirds of what they were before. As Christmas neared, Sandy’s three other kids, who had lived fairly standard lives until three years ago, told their mother they understood if there wouldn’t be much in the way of presents this year—they still had the gifts they’d received the year before.

These little kindnesses have been an unexpected—and much needed—side effect of Rikki’s condition. But living with him presents near-constant demands. The Adans must Rikki-proof their home, laying down padding and mats to keep any fall from being a catastrophe. He must wear a helmet to protect him when he has an atonic seizure. He doesn’t eat much. He cries a lot.

And not much has worked when it comes to treatment. His doctors have tried numerous drugs, and the only thing that helped him in the past were steroids. But children can’t be on those for long, and after two months, the Adans had to stop or risk a whole new set of problems for their son. Sandy was nervous about entering him into the CBD oil trial. She misunderstood the marijuana part of it—she thought it meant getting him high—and she was wary of expecting any significant improvements. Yet she has reason to hope. Rikki was the first to start the trial and has since completed the placebo phase. He started taking the CBD oil in December. The results were immediate and dramatic. His seizures have been cut in half, down from more than thirty a day. And those he does have are less intense than before.

It’s possible that patients like Jaxon are on the placebo or low-dosage oil at the moment and will see terrific results when the open-label study begins—or that they may not. It’s possible that the results Jordyn and Rikki are seeing right now will continue for years to come—or that they may not. And it’s possible that CBD may end up being the new standard for care in the treatment of LGS and other forms of intractable epilepsy—or it may not. For all the promise that CBD shows, the lack of research into the science of it still leaves a lot of questions. How does it work? Why does it work? How effective is it? For how long?

Right now, researchers in Texas and elsewhere are attempting to answer those questions. If CBD does help some of the people some of the time, the next hurdle will be getting the roughly 150,000 other Texans with intractable epilepsy a consistent supply of the drug. Currently, desperate families are moving to states where there are numerous dispensaries, like Colorado. As easy as it is for someone to say that they would do the same were it their child, there are challenges in making that kind of transition. CBD oils aren’t regulated in any meaningful way, so there’s no guarantee that someone would get effective drugs even if they had access to them. And, as evidenced by the Huffmans, the Castros, and the Adans, many families can’t afford the cost of being uprooted.

But the very fact that a state with a political climate like Texas’s has seen the potential benefits of using CBD to treat the condition—and acted on it—has ramifications outside the state. “A lot of people have paid close attention [to the Texas Compassionate Use Act],” Perry says. “If Texas will do it, then it’s probably a reasonable thing to consider.”