Something else was happening throughout the spring and summer of 2012 that I only found out about much later. Evelyn had started wondering how to contact the head of a drug company in the UK. She’d been thinking a lot about that article in Seizure—the one that documented how pure CBD slowed seizures in rodents. But it wasn’t just the encouraging results that caught her eye. It was the authors, all researchers at the Schools of Pharmacy and Psychology at the University of Reading, one of the UK’s top research institutions. She noted that they had thanked GW Pharmaceuticals, a British company she’d never heard of, for funding the study.

GW, we soon learned, manufactured pharmaceutical-grade extracts of both THC and CBD. Its main business came from a drug called Sativex, which contains a mix of the two compounds in a mouth spray for sufferers of cancer pain or multiple sclerosis. But it also seemed to have supplied pure CBD to the authors of the Seizure study.

For Evelyn this was revelatory. CBD was the only thing left that might help control Sam’s seizures. And over in the UK there was a drug company making the stuff by the pound. The next move was obvious: Find out who ran GW—she quickly determined that his name was Geoffrey Guy—and figure out how to contact him.

She emailed the GW general mailbox and called the main phone number and left a message. No response. And then on August 17, 2012, we had a heated conversation with my dad. We were visiting him at his house in Wyoming, and he sat us down wanting to know what the next steps were with Sam. He was worried that the constant struggle was crushing our family. He was also worried that we’d given up, that in our desperation we’d become like acrophobic climbers, terrified to change our position on a cliff despite only being 5 feet off the ground. That was painful to hear, but it also gave Evelyn an idea. She came to breakfast the next day and said, “If you really want to be helpful, get us in touch with Geoffrey Guy.”

My dad was worried that the constant struggle was crushing our family. He was also worried that we’d given up.

And that’s what he did. His firm, Warburg Pincus, had been doing business in London for 25 years. On August 20 he emailed some associates, detailing Sam’s situation. Eleven days later Geoffrey Guy wrote to Evelyn asking how he could help. Later that day he told Evelyn on the phone that figuring out a way for Sam to try GW’s CBD was eminently possible, and that he would do what he could to be helpful.

What we didn’t know at the time was that Guy and his team had already been wondering about human trials with CBD for epilepsy. And it turned out that the kind of one-patient experiment we were suggesting wasn’t unheard-of in the UK. Doctors there can get promising medications for their patients from the manufacturer to be used under their direct responsibility. It’s known as administering on a named-patient basis. No regulatory approval is required as it is in the US. Guy said he’d done it with more than a thousand patients in his career. “I have been looking for a number of years at using CBD in just such a situation,” Guy says. “You are a parent of a child who had a specific need. All other medicines had failed to help. We had a medicine that might help. Why on earth would that not be a good and wholesome thing to do?”

The catch was that GW would only consider helping us get CBD for Sam if we did it completely aboveboard. We couldn’t try the drug in the US. We’d have to go to the UK. We’d need our US doctor’s permission. We’d have to find an epilepsy doctor in London to take our case and to agree to supervise the treatment and various tests.

And if the medication worked, we’d need to navigate a labyrinthine approval process to legally import the drugs into the US. The research ethics committee at our doctor’s employer, UC San Francisco, would have to approve our plans to administer the medication at the hospital. Would a public institution like UCSF, dependent on federal research grants, agree to oversee treatment with a quasi-legal drug? The US Food and Drug Administration would need to sign off on what we were doing. The FDA has a process for individuals to get approval to try unapproved drugs on a so-called compassionate-use basis. We’d heard the applications were typically hundreds of pages long.

And then we’d need clearance from the US Drug Enforcement Administration. The head of the DEA at the time, Michele Leonhart, took a hard line on cannabis, which to this day remains listed as a Schedule I drug, supposedly as dangerous and addictive as heroin. Despite legalization efforts in some states, it’s the federal government that controls the borders, and to get any illegal drug across the border you must get approval from the DEA.

The magnitude of the undertaking was daunting, not to mention the cost. Just traveling to London, staying for two weeks, and paying doctors’ bills out of pocket would run into the thousands. We’d have to hire consultants to draft our applications to the FDA and DEA. Our doctor hadn’t done anything like this before. The only way she was going to be able to get behind it on our behalf was if we handled all the paperwork for her.