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The hospital pharmacist slid three bottles of pills across the counter, gave my wife Evelyn a form to sign and reminded her that this was not a high-street chemist. The pharmacist made it clear that he would be in touch with our doctor and the company supplying the medication. They would find out if she broke the rules.
Evelyn slipped the bottles into her purse. She and our 11-year-old son, Sam, were jet-lagged. They'd flown from San Francisco to London the previous day, December 19, 2012. It was just after 7pm. They'd been at Great Ormond Street Hospital since mid-morning. Sam had been through a brainwave scan, a blood test and a doctor examination.
Evelyn was terrified. They'd travelled 8,600km to get these pills, medicine we hoped might finally quiet Sam's unremitting seizures. He was to take a 50-milligram pill once a day for two days, increasing the dose to maybe three pills twice a day. They would need to revisit the hospital two more times before they returned to San Francisco on January 3, 2013. That meant two more rounds of brain scans, blood tests and doctors' appointments.
We were confident the medicine wouldn't kill or hurt Sam irreversibly, but the prospect still made us nervous. The pills contained a pharmaceutical derivative of cannabis. People have been smoking cannabis medicinally for thousands of years. Deaths are rare. But Sam would get a specific compound made in a lab. The compound, cannabidiol (CBD), is not an intoxicant -- tetrahydrocannabinol, or THC, is the stuff that gets you high. Nevertheless, US drug laws made it nearly impossible to get CBD at concentration in the US.
It had taken months of phone calls, emails and meetings with doctors and pharmaceutical company executives on two continents to get permission to try this drug. Sam wasn't joining an ongoing clinical trial. The company made the pills just for him. It believed CBD was safe based on animal studies. It also said it knew of about 100 adults who had tried pure CBD like this over the past 35 years. As a percentage of body weight, Sam's dose would approach twice what anyone else had tried for epilepsy. What would the side effects be? We didn't know. We'd volunteered our son to be a lab rat.
Then there was a bigger question: would the medicine even work? No one knew. The reason Evelyn, Sam and others in my family -- including Sam's twin sister, Beatrice, and Evelyn's sister, Devorah -- travelled to London during Sam's winter holiday was that two dozen other treatments we'd tried had all failed. (I stayed behind in San Francisco, scrambling to meet an end-of-year book deadline.)
The one thing we were certain about: this was not going to be a bargain. We'd already spent tens of thousands of dollars on consultants to help Sam's doctors set up the visit, and we were still at the starting line. The best-case scenario was that the medicine would work and eventually we'd be allowed to import it into the US. We secretly hoped that this would encourage the company to make the drug easily and cheaply available to others. We also knew this was quixotic. Our previous experience with medications suggested the whole venture would end in failure.
This much we knew: importing an experimental cannabis-based drug into the US would involve more than giving the company my address and FedEx account number.
If you're the parent of a healthy kid, it's hard to imagine yourself doing what we did. Who spends tens of thousands of dollars on anything that's not a house, a car or college tuition? Who lets their child be the first, or even one of the first, to try any medication? But Sam was not a healthy kid. He has had epilepsy since he was four-and-a-half. We'd tried every possible drug -- nearly two dozen medications -- plus autoimmune therapy using intravenous immuno-globulin and a high-fat medical diet. (I wrote about our two-year diet experiment in The New York Times Magazine.) Little worked, and the treatments that did show results didn't work for long or had worrisome side effects.
Sam doesn't have grand mal seizures, where the sufferer collapses twitching on the ground. Instead, he partially loses consciousness for five- to 20-second bursts. It's a hard-to- treat variant of so-called absence epilepsy. The seizures themselves are more benign than grand mal, and they don't leave him exhausted. But they are much more frequent. When Sam's seizures are uncontrolled he can have between ten and 20 episodes an hour. That's one every three to six minutes and sometimes more than 100 a day.
To me, watching Sam have a seizure looks like a movie that's been paused and restarted. He stops and stares vacantly. His jaw slackens and his head and torso lean forward slightly, bobbing rhythmically. Then it's over, and he resumes as if nothing happened. If he stopped walking, he'll start again. If he was packing his backpack for school, he'll continue. Though Sam says that he is sometimes aware when he has a seizure, typically his only clue is that when he comes to, everything around him has shifted slightly.
When they are frequent -- which has been often -- it's hard for Sam to have a conversation, let alone learn anything in school. Sports? Not possible. As a little kid, Sam couldn't even cry without being interrupted: he'd skin a knee, cry for 15 seconds, have a 15-second seizure, and then continue crying. Once, after watching a movie with me, he complained about the DVD being scratched. It wasn't. It just seemed that way because he'd had so many seizures.
And while Sam got little help from the many anti-epileptic medications that we tried, he endured plenty of side effects. One drug gave him hand tremors. Another made him violent. A third gave him hives. A fourth made him such a zombie that he drooled, and a fifth made him see insects crawling out of holes in his skin. Twice his seizures were bad enough that we had to hospitalise him. He'd seen six neurologists in three states. I've seen him seize tens of thousands of times. You'd think I'd be used to it, but I find each one haunting -- as if some outside force has taken over his body, leaving me, the person who is supposed to protect him, powerless.
By 2012, when Sam was 11, the only thing that was keeping his seizures controlled enough for him to attend school was massive doses of corticosteroids: synthetic versions of the body's own anti-inflammatory compounds. Taken for a week or two, they can be lifesavers. But if taken for extended periods, they wreak havoc on the body.
By the time he reached London, Sam had been on a big dose of the corticosteroid prednisone on and off for a year. He put on 13kg. His face looked like it had been pumped full of air. He was starting to get head and chest colds every month. Were he to stay on these drugs at these doses longer-term, he would face stunted growth, diabetes, cataracts and high blood-pressure -- all before he was old enough to vote. The trip to the UK felt like a last resort.
This situation is hardly unique. About three million Americans have epilepsy, and about a third of them have epilepsy that can't be curbed with medication. More than a dozen anti-seizure drugs have come to market in the past 25 years, but the number of hard-to-treat cases of epilepsy like Sam's hasn't changed meaningfully in decades.
There are dozens of seizure disorders. Some cause patients to collapse like marionettes whose strings have been cut. Others cause a single limb to twitch. Big seizures can cause brain damage. And tens of thousands of people die every year from status epilepticus, a seizure that lasts for more than five minutes and typically requires a trip to the emergency room.
Think of a seizure as an overtaxed electrical grid. The human body is full of electricity that allows brain cells, nerves and muscles to communicate in an orderly, controlled fashion. A seizure happens when this electricity spikes uncontrollably. As a result, parts of the brain's circuitry temporarily shut down. You'd think medical science would be able to tell you why this happens and what to do about it, but with a few exceptions it can't.
Most epilepsy cases are like Sam's: idiopathic, a fancy way of saying "no known cause". A typical prognosis: if we can control the seizures with the first three meds, he'll probably never have another one. If we can't, the future is less certain. Beatrice developed absence epilepsy when she was older, in 2010. The first drug made the seizures disappear. She took it for two years. We have never seen another seizure.
There was nothing invisible or mysterious about Sam's epilepsy in London, however. By the time he and Evelyn arrived, his seizure count was approaching its highest level ever. We had expected this. We'd reduced one of the drugs helping to control his condition five days before they left. If the drugs in London worked, we'd need convincing data to get permission to import them into the US. To get convincing data, we'd need to show a marked reduction in seizures.
It was not easy to watch. Two days before departure he had eight seizures. One day before departure he had 25. The day of departure he had 20, including 12 in the 88 minutes between 5:50pm and 7:18pm, immediately after the flight to London took off. By the end of the next day, when they picked up Sam's pills at the Great Ormond Street Hospital pharmacy, his seizures had more than tripled to 68. Past experience told Evelyn that if the pills didn't work fast, the following day would be a complete wipeout with more than 100 seizures.
The first time Evelyn and I talked about cannabis as a treatment for epilepsy was in early June 2011. The high-fat diet Sam had been on for two years had stopped working. There were no more conventional anti-epileptic drugs to try. In our scramble to find solutions, Evelyn learned that a nurse-practitioner in one of our doctors' offices was starting a cannabis collective -- outside of work -- to help some of the physician's sickest kids. Other parents of epileptic kids we knew were joining. Besides having a medical degree, the nurse was a herbalist. She'd heard that cannabis -- if made into oil-based tinctures, taken by the drop instead of smoked – could help people with intractable seizures.
We knew that if we were going to ditch western medicine to treat Sam's epilepsy, we'd have to do a lot more homework. Many people, often justifiably, hate drug companies. But one thing they are good at is making sure that every pill, drop or spray of medicine they supply is exactly the same. Treating Sam's epilepsy with cannabis would mean the reliability, consistency and potency of his medicine was no longer assured. I'd smoked plenty of weed in college and in my twenties. I knew the plant could have real medicinal effects; medical cannabis was legal to buy in California with proper documentation. But rightly or wrongly, the idea of treating Sam with cannabis -- he was ten at the time -- alarmed me.
By the time another year had passed, we were desperate. Intravenous immunoglobulin hadn't worked. And it was becoming increasingly less safe to control Sam's seizures with high doses of corticosteroids. In May 2012 we wrote a $600 (£400) cheque to join the cannabis collective. We knew to expect uncertainty. Plants as medicine are by their nature variable in potency. The nurse was still trying to figure out which strains worked best. And while some parents were reporting good results, no one was seizure-free. But over the previous year we had also learned that treating epilepsy with cannabis wasn't crazy at all. A small but growing body of research suggested that CBD might be a powerful anticonvulsant. And then, remarkably, the first tincture we tried seemed to ratify those findings. For three days, Sam's seizures went from up to 20 an hour to about one an hour. The tincture was odd-looking -- a bunch of cannabis leaves and stems in a brown mason jar marinating in oil. We'd put a drop of the liquid on Sam's tongue three times a day. It was supposed to be 20:1 CBD to THC.
In July, coinciding with a new tincture, Sam's seizures returned. By the middle of the month he was having around ten an hour. We tried increasing the dose. We tried tinctures bought at three medical cannabis dispensaries. They didn't work either. By mid-August we were thinking about putting Sam back on steroids. That was when the collective received test results for the latest batch of tinctures. They'd been advertised as having a 20:1 ratio of CBD to THC, but it turned out there was little CBD or THC in any of them. We also tested one of the other tinctures we'd bought from a supposedly reputable supplier. We'd been told it was 10:1. It was 3:1. The tincture that worked for Sam in June hadn't been tested, so we had no idea how to assess the temporary drop in seizures.
This was infuriating and frustrating. We knew the collective was still finding its way, but we'd convinced ourselves that it had mastered the basics. We only had ourselves to blame, though. We didn't have the tinctures tested either.
Something else was happening throughout the spring and summer of 2012 which 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 an article in Seizure, the medical journal of the British Epilepsy Association, which 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, 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. The next move was obvious: find out who ran GW -- she quickly determined that his name was Geoffrey Guy -- and get in touch. My dad's firm, Warburg Pincus, had been doing business in London for 25 years so 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.
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.
The catch was that GW would only help us if we did it above board. 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 treatment and tests. And if the medication worked, we'd need to navigate a labyrinthine approval process to get the drugs into the US. The research ethics committee at our doctor's employer, UC San Francisco (UCSF), would have to approve our plans to administer the medication at the hospital. The US Food and Drug Administration (FDA) would need to sign off on what we were doing. We'd heard that the FDA applications were hundreds of pages long. And we'd need clearance from the US Drug Enforcement Administration (DEA). Despite legalisation 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 -- and the cost -- of our undertaking was daunting. Just travelling to London, staying for two weeks and paying doctors' bills 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.
We met Geoffrey Guy face-to-face in a conference room off the neurology waiting room at UCSF. We were dressed like we lived in California. Guy was dressed like an early-20th-century English banker. He wore a double-breasted suit, a white-collared blue shirt with French cuffs and a yellow tie with blue polka dots. Evelyn and I had been exchanging emails with him since the end of August 2012. Now, in early December, we were sitting down to discuss some last-minute details of our London trip. The meeting was also an opportunity for Guy to talk to Sam's new doctor, Roberta Cilio. Sam's longtime neurologist had had to take an emergency leave of absence the week before. Cilio, an eminent Italian physician who had only joined the staff of UCSF the previous September, was jumping into the middle of an unfamiliar case. We were meeting her for the first time too.
We knew little about Guy at that point other than the essentials: he was a longtime biotech entrepreneur, and he had an experimental compound that, turned into a drug, might help Sam. We learned later that he'd started three notable drug companies and brought more than a dozen medicines to market. He knew more about cannabis than almost any executive in the world. And in more than 30 years as a biotech CEO he had built a reputation as a maverick -- someone attracted to the thorny, controversial pharmacological issues that most executives try to avoid. Guy had been thinking about starting a company to make medicines from cannabis since the early 90s.
Back then, regulators in the UK said they would never approve it. But by the middle of the decade, the British political landscape had began to shift significantly.
The courts were clogged with the cases of multiple sclerosis and cancer patients who'd been arrested for using cannabis to combat things such as muscle spasticity and the symptoms of nausea from chemotherapy. Politicians and activists were calling for partial legalisation.
And so, in July 1997, Guy found himself at a joint conference of the Royal Pharmaceutical Society and the Multiple Sclerosis Society. Onstage, top UK doctors and regulators were wondering aloud what it would take for a company to make a cannabis pharmaceutical. Guy raised his hand and explained how he thought it could be done. A year later, in June 1998, Guy and co-founder Brian Whittle got permission to start GW. "It was like a wormhole opened up and we'd spent the previous ten years studying wormholes," Guy says.
By 2012, GW was one of only a handful of firms in the world doing legal, drug-company-quality research on cannabis. It owned huge hothouses containing thousands of cannabis plants in legal but undisclosed locations south-east of London. It had labs converting the plants into medicinal extracts and a factory that could turn them into sprays, tinctures and pills. It had 177 employees and $51 million in revenue. And it was manufacturing its first drug, Sativex, approved for sale in the UK, Canada and 22 other countries to treat MS.
Back in the UCSF conference room, we finalised our plans: Evelyn would take Sam to London, where he would try pure CBD pills made especially for him. He wouldn't be the first person to try pure, pharmaceutical CBD for epilepsy.
Four small studies between 1978 and 1990 had tried it on a total of about 40 people. Surely others had tried homemade concoctions. But he'd certainly be the first kid, and arguably the first person in more than 20 years, to try CBD of this purity for epilepsy. We hoped it would work for Sam and that many other patients like him would follow.
Settling into London, Evelyn was almost afraid to believe how well the treatment seemed to be working. After having 68 seizures on Thursday, the day Sam and Evelyn spent at Great Ormond Street Hospital, Sam had ten on Friday and five on Saturday, ten on Sunday and six on Monday. She increased the dose of CBD from 50mg to 250mg a day and his seizure count continued to fall. They didn't see any side effects.
Sam's seizures decreased so quickly -- in less than 24 hours -- that two days after taking his first pill he was zip-wiring, harnessed, ten metres in the air above a carnival in Hyde Park.
At first we said nothing to family or friends. We worried that, like so many promising treatments we'd tried, the effect would be only temporary. But by December 28, 2012, eight days after Sam's first pill, it was obvious that we were witnessing something fantastic. "Best day yet," Evelyn wrote to friends and relatives. "Today Sam had a total of three seizures -- short, seconds-long. From our starting point of SIXTY-EIGHT seizures. I would say we are doing very well. And we can go higher on the dose if we like. Along with being nearly seizure-free, Sam is more mature, more relaxed and funnier. No idea if that is a physiological effect or just a result of not having his train of thought interrupted all the time, but who cares... I love to see all that come out."
Our euphoria lasted two weeks. The trial was ending, and Guy wasn't going to let us take any CBD back to the US. On January 2, 2013, he emailed Evelyn telling her that he'd be sending one of his executives to the hotel to pick up any unused pills. We knew to expect this, but it was still excruciating. Two weeks into enjoying the best seizure control of Sam's life, we were being asked to give back the medicine that got him there. We had cobbled together a plan to manage Sam's seizures during the time it would take us to obtain permission and co-operation from UCSF, the FDA and the DEA. We hoped that would happen in less than six months, as we'd been told. But no one knew for sure. When you've found the first medicine in seven years that controls your child's debilitating illness, not having it for an hour feels too long.
What we used to control Sam's seizures during that time seems irresponsible in retrospect. A few weeks before we left for London we'd found an outfit in Colorado that claimed to make CBD pills from hemp. They seemed to help Sam a bit, and the company was willing to send the pills through the mail. Testing showed a CBD-to-THC ratio of 18:1, but we didn't know whether their manufacturing process was clean. A month's supply cost more than $1,000. At the time it seemed better than putting Sam back on steroids.
The agents from the DEA appeared without an appointment at Cilio's UCSF office door on March 1, 2013. They showed her their badges, asked permission to question her, and made it clear that this was not going to be a friendly conversation. "They asked a lot of personal questions," she says. "Where was I from? Had I ever used illegal drugs?"
The questioning, which went on for two hours, got particularly tense when the agents asked Cilio how she planned to dispense the special drug. "I said that I would keep it here in my office and then put it in my purse and walk across the street to the clinic to see my patient. And they said, 'You have no idea what you are talking about. This is a Schedule I drug. It's like heroin. You can't cross the street with it in your bag. You have to keep it in your office, and you have to give it to the patient in your office.'"
As part of the special licence application process, she'd been briefed by UCSF security and demonstrated to the agents that she understood how the locks and alarms worked in her office suite and building. They weren't satisfied.
They took pictures of the furnishings in her office, including the cabinet she told them she was going to store the medicine in. They told her she would need a safe.
I was both elated and panicked when I heard about the agents' interview. Setting up a site visit by agents is notoriously slow. Our application had been live for only about eight weeks. But I worried the demand for a safe would suck our application into a bureaucratic quagmire.
I thought I could just buy a cheap jewellery safe. I was wrong. According to government regulations, the safe needed to be certified for "30 man-minutes against surreptitious entry; ten man-minutes against forced entry; 20 man-hours against lock manipulation; and 20 man-hours against radiological techniques". In English: a one-metre-square steel box that weighs 400kg and looks like something Road Runner used to drop on Wile E Coyote.
It turns out that used safes are not hard to find. Cilio said that if I bought one, she'd gladly put it in her office. UCSF officials said it was OK as long as the safe didn't violate building load limits. Within a day I was the proud owner of a used blue Meilink TL-15 plate safe with a group 1R lock. I had it delivered to Cilio's office. The cost for unravelling this bureaucratic knot: $2,100.
The DEA approved our application on March 19. Between getting import permits, clearing customs and Cilio's unrelated attendance at an overseas conference, another six weeks passed. Sam took his first CBD pill in the US on May 4, three weeks before his 12th birthday.
The total bill for getting GW's CBD into the US was roughly $120,000, excluding travel. Two consulting firms -- one an expert in the workings of the FDA, the other an expert in the DEA -- generated most of those expenses. It's an enormous amount of money, but it's hard to imagine how we could have done it without them. They helped Cilio with the mountain of paperwork and worked their FDA and DEA contacts to make sure our application kept moving. Despite their initial antagonism, the DEA agents also moved our application along quickly when we met their demands.
We wouldn't have even known that consultants did work like this had Steve Willard, a Washington, DC, drug company entrepreneur, not introduced us to them. Sam now says he's his best adult friend, even though he was my dad's friend first.
Usually, getting access to experimental drugs that are potentially lifesaving doesn't work this way. With terminal-cancer patients, for example, oncologists know what new drugs are in development and have a mechanism already established to work with a company and quickly get FDA approvals. Yet GW was supplying drugs that were illegal in the US. No US hospital would take on a project like this.
But it appears our enormous bill for helping Sam has also jump-started the development of what doctors tell us could be one of the most exciting new drugs to treat epilepsy in a generation. Within a month of our return from London, Guy and GW started talking to epileptologists at four other US hospitals about doing studies with their sickest kids. And on January 26 in New York City, 15 doctors, researchers inside and outside the US government and GW officials sat in a conference room at NYU and began mapping out a strategy.
Those initial investigations -- five hospitals, 25 kids apiece -- proved so encouraging that GW in 2014 expanded them to what it expects will be 1,400 patients at more than 50 hospitals in the US and the UK by year's end. The drug now has a name -- Epidiolex. (Guy thought about naming it after Sam.) It has a fast-track designation from the FDA, meaning that it could be available on the high street within three years.
Epidiolex is not a miracle cure. The most recent data, out in April, shows that of 137 kids who tried it for 12 weeks, it helped about half, reducing their seizures by at least 50 per cent, with nine per cent becoming seizure-free. This is better than it sounds. All of the patients in the trials had run out of conventional options. It is also a reminder that CBD, Epidiolex or any seizure drug doesn't help everyone.
Today CBD's potential for treating epilepsy has become an important story in medicine. In August 2013, Sanjay Gupta, CNN's chief medical correspondent, reported on a cannabis strain that had all but cured Charlotte Figi, a five-year-old girl with Dravet syndrome, one of the worst kinds of epilepsy.
Figi was in a wheelchair, on a feeding tube, with a do-not-resuscitate order before her parents started experimenting with high-CBD cannabis in 2012. The oil, supplied by a group of evangelical Christian brothers in Colorado Springs named the Stanleys, helped her almost immediately. Figi quickly went from 300 grand mal seizures a week – an average of 40 a day -- to about four a month.
Three cannabis documentaries on CNN and a week's worth of editorials in The New York Times in 2014 have ignited a national conversation not just about CBD for epilepsy but also legalising cannabis entirely. Twenty-three US states have legalised it for medical use, 18 states have decriminalised recreational use too, and four states have made recreational use completely legal. At least five other states, including California, are expected to put legalisation to a vote in 2016. And bills in Congress to change the laws on a federal level, which would make it easier for researchers to study cannabis in the lab, are finally getting traction.
Edward Maa, a neurologist at the University of Colorado, Denver, is doing the first study of the Stanley brothers' strain, now called Charlotte's Web, to get data on its effectiveness. He has 14 Dravet patients so far. The Stanleys now ship Charlotte's Web across state lines, because the cannabis has so little THC that it is considered hemp. The operation has 3,508 customers, about a third of them kids with epilepsy.
Little of this was happening four years ago, when Evelyn and I first started using cannabis and epilepsy in the same sentence. Watching Sam's life unfold alongside it has been profound. He now has between zero and five seizures a day, and he's been off all other anti-epileptic medications for almost two years. GW makes Epidiolex as a liquid now. Sam takes 3.5ml at breakfast and dinner. He is, perversely, more frustrated by his episodes now than when he was seizing every few minutes. Back then he was in a fog. Now, because he is so close to being seizure-free, he feels each disruption more keenly. He increasingly understands that if we can't get the remaining few to go away, he won't be able to drive a car or ride a bike.
But for the first time in a decade he is living like a normal boy. He takes a bus and a train home from school every day. He's studying to be a bar mitzvah next year. He plays Halo at his friend Brian's house on Friday afternoons. Before school broke up for the summer, he was doing more sports than he had time for. He could barely run 100 metres without seizing three years ago. Last summer we went fly fishing and rock climbing. He makes up songs in the morning before school.
Most of us spend our childhood blissfully thinking that our parents can solve most of the big problems we face. Sam had to find out way too early that sometimes that's just not true. I hate that he had to learn that lesson so soon.
I hope surviving it will give him the inner strength to better handle life's other beanballs.
All of this makes me recall a conversation I had in 2009 with Doug Nordli, an eminent Chicago epileptologist. He made a point of saying that, as hard as we might find it sometimes, the one thing we should never do is become hopeless about Sam's seizures. This wasn't just a pep talk. He said that he'd seen kids like Sam rebound with astonishing speed once their seizures were brought under control. I wanted to believe him, but back then I just couldn't.
Now I see proof every day of how wrong I was.
Fred Vogelstein is contributing editor to US WIRED and author of "Dogfight: How Apple and Google Went to War and Started a Revolution" (William Collins)
This article was originally published by WIRED UK
