Hundreds of families have moved to Colorado in hopes of healing their sick children — kids conventional medicine has failed. They’re turning to a liquid form of marijuana that has helped some, but not all. This is the story of 12-year-old Preston and his mother, Ana.

Ana Watson looks across the living room of the Colorado Springs house that still doesn’t feel quite like home and sees her son, Preston, sitting stiffly on a brand-new couch. His eyelids flutter, struggling against the seizures that have quaked through his brain every day since he was 3 months old.

“We have a special squirt-squirt we need to do, OK?” Ana tells Preston, adopting a smile as she walks toward him. “You need to be a big boy.”

In her hand, Ana holds the first dose of what she hopes will finally stop the seizures. More than a dozen medicines have already failed, and continuing down the certain path of conventional treatments promises only more misery and maybe even death for Preston. So Ana has chosen uncertainty in the form of this amber oil created in a Boulder County garage.

Just to get to this moment in July, she had to uproot her family and move across the country from North Carolina to Colorado, one of the few places where the new and unregulated treatment is at least somewhat legal. She’s committing a federal crime just for trying.

“Open up,” Ana coos.

Instead, Preston turns his head side to side to avoid the dropper. Squirming on the couch next to his mother, he’s nearly as tall as she is. But hundreds of seizures a day have restrained his development to that of a 2-year-old. He is 12 years old, yet in many ways he’s a 70-pound toddler.

Ana grabs his arm, but he pushes her back. She tackles him and squirts the oil into his mouth, but he coughs it back up. She reaches for her cellphone.

“Help,” Ana writes in a Facebook message to the community of parents who have tried the same treatment. “He is spitting it out and gagging. Can I mix it with food, give rectal? Any suggestions?????”

Ana’s mom, Milly, stirs more medicine into ice cream and brings it over. But Preston won’t eat.

Ana tries to bribe him with his favorite YouTube videos — “I’ll press play if you take a bite.” He still refuses.

She promises him that his little sister, Sydney, will dance if he takes his medicine. “I’m not doing it,” Sydney says.

Ana’s shoulders slump, and Milly tells her to back off.

“You’re overdoing it,” Milly admonishes. “Skipping it is not going to hurt him.”

But Ana’s jaw clenches.

“Why did we even come down here if he’s not going to take it!?” she snaps.

“We can’t force him to take it!” Milly shouts.

“He needs to learn to take it!” Ana says.

Milly walks out of the room, saying they should try later.

“Stop arguing with me!” Ana finally says. “Damn.”

She turns toward Preston, and, as if he senses the tension, the cringe on his face pivots into an awkward smile. He starts to laugh, and she does, too.

“Silly mommy,” he says quietly.

Ana eventually calls a friend, who suggests giving the medicine in emptied pill capsules delivered as a suppository. She grimaces. But she has already been at it for an hour. The odds that seizures will kill Preston increase every year; the damage in his brain may soon be permanent. She is compelled to try.

“OK,” Ana says as she fills the capsules. “It’s not going to be pretty.”

This time, she walks to him without a smile. She leads him into the bathroom and pulls down his diaper. She muscles him close.

Preston squeals. Once. Then again.

“I know!” Ana pleads. “I’m sorry!”

His cries fade to whimpers. His eyelids twitch with another seizure. Ana sits on the toilet, holding him on her lap as he quivers in her arms.

“It’s OK,” she whispers. “It’s OK, Boo-Boo.”

Seven months and 1,600 miles after their journey began, Ana has finally given Preston his first dose of marijuana.

Exodus

Medical marijuana has made Colorado a promised land for desperate parents trying to save their children.

Children have arrived here nearly lifeless. Families have lived out of motels when they couldn’t find housing. Parents have shown up at a medical marijuana provider’s house in the middle of the night.

What is CBD, and how is it taken?

What is CBD?

CBD — or cannabidiol, as it’s known scientifically — is one of dozens of compounds in marijuana called cannabinoids. The compounds work by plugging into receptors on nerve cells, although much of their activity is still unclear. Tetrahydrocannabinol, or THC, is the most famous cannabinoid found in marijuana. But, unlike THC, CBD does not get users stoned.

How is CBD taken?

Kids using CBD don’t smoke it. Instead, it comes infused into a cooking oil, like olive or safflower oil. Typically, parents are told to squirt the oil under their children’s tongues. But some families mix it in food or give it through a feeding tube.

How is CBD oil made?

No child in Colorado currently takes pure CBD. Instead, think of a marijuana plant like a chunk of gold ore. Only a tiny part of it is valuable; the rest needs to be refined away. To do this, CBD producers grow marijuana plants that are high in CBD and then use a solvent to dissolve the cannabinoids off the harvested plant material. The resulting slurry has the same cannabinoid makeup of the plant it came from. Depending on the method, the solvent may be evaporated away and the rest is diluted into oil.

How much does it cost?

Overall cost varies based on the amount a child takes, which itself varies based on how big the child is. Different providers also charge different prices. For kids using Charlotte’s Web, a typical family spends about $300 a month for CBD oil.

At least two children and one woman across the country have died while their families prepared to move to Colorado for medical marijuana. One child who made it here died when the treatment didn’t help her condition enough. Her mother moved back home alone.

But no one knows more than anecdotes because Colorado does not track how many families come to treat their children with medical marijuana — although it’s in the low hundreds — or where they go.

No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.

Most important, no one knows how often it works.

A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.

But, when parents such as Ana Watson arrive with little more than a desperately sick child and a hope to make it better, they walk into uncharted territory. They become part of a medical experiment that plays out in living rooms, not doctors’ offices.

“I can’t be the parent who didn’t try,” said Janéa Cox, a mother from Georgia who brought her daughter to Colorado in March for treatment of seizures that left her unable to even breathe on her own. The move meant breaking up her family; her husband remained at home in Georgia.

“Colorado represents hope at this point,” she said. “This is the state of hope.”

A spectrum of illnesses afflict the children coming to Colorado for medical marijuana: cancer, autism, Crohn’s disease. Most, though, are seeking help for incurable forms of childhood epilepsy — diseases with names taken from medical-journal bylines: Dravet syndrome, Lennox-Gastaut syndrome and Doose syndrome.

The migration began just over a year ago, when CNN aired a documentary featuring a Colorado girl named Charlotte Figi, whose constant seizures caused her to stop speaking for months. While taking a form of the marijuana treatment, the seizures subsided, and she bloomed anew into a happy child seen laughing and playing in video clips. News stories began reporting that other children were seeing similarly miraculous results. To parents of kids with severe disorders, the articles seemed almost out of a storybook. So it was fitting that the brothers who grew the marijuana for the kids named their product Charlotte’s Web.

Smaller numbers of children in California and other states have also begun to use marijuana to treat seizures. But what makes Colorado the epicenter is the state’s large medical marijuana system, which allows for kids to be registered patients; the growing community of families with sick children; and the feedback loop of publicity that surrounds the treatment. Every happy story about a family seeing success with cannabis in Colorado pushes another family to move here.

Today, there are 427 children under 18 on the state’s medical marijuana registry, including 13 under 2 years old. That total number is up from just 60 in August 2013, when the documentary aired. More arrive every month.

This is marijuana that often comes in medicine bottles, an oil extract from cannabis plants that is frequently squirted under a patient’s tongue. It’s the opposite of most commercial cannabis. Rather than being high in THC — the plant’s psychoactive chemical — the marijuana is low in THC and rich in CBD, a compound that does not get users stoned but has shown medicinal potential.

The few, small studies of its efficacy, though, are preliminary and even disputed. Federal laws against marijuana have hampered research on CBD for the past four decades. As a result, states have increasingly passed their own laws legalizing CBD, based on little more than stories such as Charlotte Figi’s and the hopes of families following in her path.

An early and oft-reported survey of children on Charlotte’s Web found that 80 percent who tried it eliminated at least three of every four of their seizures. Now, even one of the specialists involved in that study questions whether it was overly optimistic. Subsequent studies have suggested the response rate might be closer to 30 percent or, perhaps, even lower.

It’s not just that parents are taking a gamble by moving to Colorado. It’s that they don’t even know the odds.

“When these kids come, we hear a lot about it,” said Dr. Larry Wolk, head of the Colorado health department and a skeptic of the treatment’s success. “They get their CBD oil or their Charlotte’s Web. And if they respond, we continue to hear about it. If they don’t, they quickly disappear.”

Like all of the parents coming to Colorado in search of a cure, Ana Watson hopes hers will become a success story. Staying in North Carolina offered no hope for Preston. Still, she can’t predict what lies ahead.

The journey would be harder and more complicated than she ever imagined.

Preston’s journey

Preston’s baby book begins with pictures from a sonogram.

“It’s a boy!” the sticker on the page proclaims.

Turn the page, and there’s a picture of Preston in a white onesie. Then a picture of Preston sitting in a kid-sized Jeep.

On the next page is a picture of Preston with his head swaddled in gauze, a thick bundle of electrical wires poking out of the top of the wrapping like a bizarre ponytail.

“The Journey” is the title of this new section in the book.

It sounds so much better than calling it an ordeal.

Ana was only 19 when she learned she was pregnant with Preston. She was a college freshman who had to take a break from school and live with her parents for a few months in rural Whitsett, N.C., while she prepared for motherhood. Her pregnancy was normal, aside from the delicate tremors she sometimes thought she felt in her womb. Her high school sweetheart, Preston’s father, drifted out of her life. He has never seen Preston in person.

After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped muscles. It was three months later that she learned the doctors were wrong.

She was giving Preston a bath — not his first, not unusual. But then his eyes rolled back in his head and his face went white and his little body began to shake and Ana was certain he was dying. At the hospital, doctors quickly sent her home. Lots of kids have random seizures that never recur, they said. But Preston’s did.

Ana doesn’t remember what Preston’s first word was. What she does remember is that first word arrived right on time. As did his first crawls. And his first steps.

How a child becomes a medical marijuana patient

Colorado has a special process for kids to be registered as medical marijuana patients under state law. These are the steps:

Step 1: At least one parent and the child must be Colorado residents. Residency can be established quickly.

Step 2: Two separate doctors must recommend that the child use marijuana. Doctors can make the recommendation only if they diagnose the child with one of eight conditions: cancer, HIV, glaucoma, cachexia, persistent muscle spasms, seizures, severe nausea or severe pain.

Step 3: Parents must fill out an application and get it notarized. The application includes a parental consent form that both parents must sign. Parents must submit a copy of the child’s birth certificate, and they must list themselves as their child’s medical marijuana caregiver.

Step 4: The Colorado Department of Pubic Health and Environment will review the application. The department typically takes about five weeks to issue a medical marijuana card. Incomplete applications are rejected, and parents have 60 days to fix the mistakes. If an application is denied, parents must wait six months before reapplying.

It wasn’t until his second year of life that Ana began to notice the toll the seizures were taking. When other kids Preston’s age were learning more words and stringing them into sentences, he didn’t. When walking and grasping led to running and catching for other children, it didn’t for Preston. It was as though his life ground to a stop, even as time ticked on.

The neurologists were baffled and kept hunting for new medicines.

They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.

The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.

To Ana, it sometimes seemed as if what epilepsy didn’t take from her son, the drugs would. But she also knew that just one year of uncontrolled seizures meant a 1 percent chance of dying. The longer Preston’s seizures ran riot, the likelier epilepsy would kill him.

“You know you’re fighting for your child,” she said. “You just do whatever it takes to get what you need for your child. People slack off. You have to stay on top of them.”

Being Preston’s mother taught her not to cry because tears won’t make her son better. For her, there is a process: Try one thing, then move on to the next. Lessons can be learned and applied.

Marijuana legalization by state

Several states now allow some form of medical marijuana. Only two states — Colorado and Washington — allow recreational marijuana, but Alaska and Oregon will soon join their ranks.

So Ana kept searching for a cure.

Her bookshelf at home charted the journey and spoke to her struggle. First came “What to Expect in the First Year.” Then “Keeping Faith.” Then “Delmar’s Drug Reference for Health Care Professionals.” Then “Three Weeks to Say Goodbye.”

Ana married, and Sydney was born. She and her husband fell into debt, in part because of medical bills before Preston qualified for Medicaid. Their marriage collapsed under the stress, and Ana moved back in with her parents. She tried working full time, then cut back to part time.

It wasn’t until Preston was 6 years old that doctors finally put a name to his condition: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.

“Seizures all of the time”

At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.

“It’s been a constant struggle of trying to limit the number of seizures he has,” Greenwood said of Preston, who at age 1 started as a patient of Greenwood’s. “We have tried literally everything.”

As a pediatric neurologist, Greenwood had treated hundreds of kids with epilepsy in his 37-year career. But Preston’s case was a unique challenge.

“In his case, the biggest problem is he has seizures every day,” Greenwood said. “Multiple seizures. At times, he could walk down the hall and you could see 10 to 20 seizures happening, little jerks. So he was literally having seizures all of the time.”

Dravet isn’t like other epilepsies.

While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.

Some epilepsies respond well to generalized anti-seizure drugs. But the specific genetic mutation of each Dravet patient is different, meaning what works for some won’t work for others. Preston has at least four different kinds of seizure types, and they varied in severity and frequency as he grew older.

There are the grand mals, known clinically as tonic-clonic seizures, that are full of violent convulsing that can last minutes. Preston falls into one about once a week. But much more common are the little eye flutters. In medical terms, they are called myoclonic seizures. Ana calls them “blinkies.” They look as though Preston is on the verge of sneezing.

He can have hundreds of blinkies a day. And, though they usually pass gently, each one is like an eraser across his brain’s chalkboard. Over and over, new development is wiped clean by the seizures. So, over and over, he learns the same things.

At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.

Sometimes, Greenwood and Ana would find a medicine that worked for Preston. The seizures would lessen and Preston would start to walk more steadily. But, just as quickly, Preston’s brain would rewire itself back to a broken state and the seizures would return.

Sitting in the hospital meeting room, Greenwood said there was little more he could do for Preston with the medicines available. Without something new, Preston’s seizures would continue into adulthood — assuming he didn’t die before then.

Asked whether Preston would ever be able to speak a complete sentence, Greenwood’s eyes lit up with the idea, then quickly dimmed.

“That would be really nice if he got that far,” he said, “but there’s not much evidence right now he’s moving toward that.”

Keeping daydreams in check

Preston’s eyes slowly opened somewhere under the fluff of his mother’s comforter.

“Time to get up, Boo-Boo,” Ana said to him. “Come on.”

A voice tiptoed back to her with the peanut-butter-mouth slur of a child’s early words: “Wuh moh minuh.”

“OK,” Ana said, “One more minute.”

It was about a month before the move away from their little brick house in Greensboro, N.C., and, sometime in the night before, Preston left his own bed and sleepwalked into Ana’s. Sydney was already there. When Ana woke before dawn, she was nestled between children.

Once begun, the morning ticked along with practiced precision. Ana made the fried potatoes Preston only ever wants for breakfast. Eight-year-old Sydney quietly dressed and got ready on her own, until it was time to ask mom to fix her ponytail.

Finally dragging Preston from bed, Ana sat him in his skull-and-crossbones pajamas in front of the television and turned on a video of Barney the dinosaur. Sydney walked by and scrunched up her face. She had already outgrown Barney.

But Preston watched rapturously, planting his elbows onto his knees and his head into his hands. His eyes are a deep walnut color and are framed by long eyelashes. Brown hair swirls atop his head in casual rebellion. His smile is all in the top lip, pulling up past his gum line to reveal a row of glimmering teeth.

Slowly working his way through the potatoes, Preston’s hands stopped and his eyelids flickered for a few seconds before popping back open. The first seizure of the day had come and gone.

Over the fireplace hung a photo of Preston in a straw cowboy hat. He’s shirtless, leaning onto his left elbow. His mouth is closed and his eyes set in a stoic glare, and he appears startlingly mature — a boy trying to look like a man trying to look like a rock star.

There are times, Ana said, when she can almost see what Preston could become if the seizures would just let him.

Everyone in her family has their own vision of what Preston might be. Ana’s mom sees Preston getting a job at a park running a lawn mower. Ana’s dad — the man who taught Preston how to be a boy, to love mowers and tractors, and to shout, “Crank it!” — imagines playing catch with his grandson.

Ana tries to keep her daydreams in check. What good is it to view her child as something he’s not? But there is one thing she hears the parents of Dravet children often say, and, yes, she hesitantly admitted, she would like it, too.

“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’ ”

A leap into the unknown

Ana’s decision to move had seemed like an easy one. In late 2012, she saw on Facebook a video of a California man using medical marijuana to treat his son’s seizures. “This brought tears to my eyes!” she wrote then.

The documentary about Charlotte Figi aired the next summer, and by late 2013 — as Preston approached his 12th birthday stuck in the same developmental rut he had been in for his previous nine — the online whispers of a marijuana miracle in Colorado had turned into a roar. One by one, other Dravet children’s parents — with whom Ana had become close friends online but never met in person — began arriving in Colorado, posting hopeful updates on their children’s progress. The hope tugged at her.

“We’ve pretty much tried everything else we can,” she reasoned.

And so this was the logical next step. A leap into the unknown.

The closer the move came, the worse Preston seemed to get. He suffered a grand mal seizure at the fundraiser Ana and her parents put together to raise the $15,000 needed for the move. He suffered another grand mal returning from a last-second beach getaway.

He grew reluctant to eat or drink, which left him not only weak but also not getting the right dose of conventional medicine hidden in his food. The day the movers arrived, Preston sat on the grass holding his grandmother’s hand while the blinkies attacked.

“Wha doin’?” he shouted between seizures, because he didn’t know what it meant for the movers to be there.

In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.

Greenwood had been cautiously supportive of Ana’s move, in part because it preserved some of his input into Preston’s care. Tell a family no when they’re on the trail of hope, and they’ll leave you behind. For all of the parents asking him about moving to Colorado — Ana was not the first — Greenwood had told them the same thing: There’s no hard evidence it works, but there’s no hard evidence it’s causing harm, either.

When he looked at the exodus of families heading to Colorado, Greenwood worried about the people who might prey on their desperation. But he also worried about the enthusiasm that might spring from their hope. He had warned Ana strongly against taking Preston off his other seizure drugs.

“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.

After the movers left, Preston’s blinkies hit even worse. Drool dribbled off his chin and onto his T-shirt. Milly, who was watching him while Ana packed up the last things, sensed a bigger seizure building. She fanned Preston, hoping to calm the blinking.

“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”

Hope for Preston

It took 12 days after arriving in Colorado for Ana to get the marijuana oil for Preston’s first dose. Twelve days of waiting. Twelve days of seizing. Twelve days of wondering what would happen.

She had to wait another three days after picking up the oil for a lab report to come back to confirm its potency. When the day of the first dose finally arrived, in mid-July, Ana bounded into the kitchen of her new home to pull a bottle of the oil from the fridge.

She cracked it open and burst into giggles.

“It smells like marijuana,” she laughed. “I didn’t think it would.”

Holding the bottle of amber-colored oil in her hand, she scanned the report to figure out how much she should give Preston. But the report was indecipherable. How could she convert these numbers into the recommended dose?

She checked her phone for online answers. Finally, eager to move on, she set the phone down.

“We have a special squirt-squirt we need to do, OK? You need to be a big boy,” she said.

Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.

An hour-and-a-half later, as Preston quivered on her lap in the bathroom following the first dose, she realized this journey would be tougher than she hoped.

Ana returned to the kitchen and shakily exhaled.

“That,” she breathed back in, “was pain.”

The migration to Colorado by families of sick children seeking medical marijuana is fueled by hope, not science. Little is known about the treatment’s effects, and researchers suggest that some parents see progress because they’re desperate to see it.

Inside Children’s Hospital Colorado, Ana Watson stares across the small exam room at the woman in a white lab coat quizzing her.

Banzel?

“Tried it,” Ana says.

Keppra?

“Is that the one that causes the rash?” Ana asks.

“Keppra often causes behavioral issues,” the doctor responds.

“Yes, that’s what we got with that,” Ana says.

The doctor continues down the list of anti-epilepsy medications, collecting the medical history of Ana’s 12-year-old son, Preston, whose seizures cause such unrelenting brain damage that he functions at the level of a 2-year-old. The doctor ticks through 13 different medicines, but Preston has already tried each one, to little effect.

That’s why Ana moved her family across the country to Colorado, where Preston could try a treatment that’s not on the doctor’s list. Three days before the doctor’s appointment in mid-July, Ana gave Preston his first dose of an unregulated medical marijuana extract that is high in a compound called CBD. Hundreds of families like Ana’s have moved to Colorado for the treatment, hoping it will calm their children’s seizures.

A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures.

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So, the entire day after that first dose, Ana watched Preston like a poker player looking for a tell.

Preston yawned. Did that mean the marijuana made him sleepy? Preston ate. Did the extract make him hungry? Preston didn’t seem to seize as often.

Was it working?

Then the next day, Preston suffered a grand mal seizure that left him writhing violently. He had another one the day after that. Getting him to eat or drink had become nearly impossible, and that meant he wasn’t getting consistent doses of either the CBD treatment or his traditional medications, both of which Ana tried to hide in Preston’s food or sweet tea.

So now Ana is sitting in the hospital whose doctors have been the most outspoken in Colorado in urging parents not to use marijuana to control seizures — it’s too risky, they say; there are too many unknowns — and she is hoping for advice on what to do.

Ketogenic diet, the doctor asks?

“Basically, we’ve tried it all,” Ana says. “That’s why we moved here for CBD. His doctors said we can’t go up in his meds anymore, and we were at a stopping point.”

The doctor looks at her list. She looks sympathetically at Ana.

“Have you tried Stiripentol?”

“Yes,” Ana sighs, “we’ve tried everything.”

“We don’t make recommendations”

The CBD rush to Colorado is a movement that divides patients from doctors.

Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment.

The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.

“What I always tell people is you have to be really careful,” said Dr. Larry Wolk, the executive director of the Colorado Department of Public Health and Environment. “They have to know that it’s outside of the regulatory process, outside of the (Food and Drug Administration), and it’s very much ‘Buyer beware.’”

Many of the families arriving in the state for medical marijuana — as well as those already living here — seek out the care of specialists at Children’s Hospital Colorado. About 100 kids who see doctors at the hospital have tried a CBD treatment.

But no doctor at Children’s recommends using cannabis or gives more than cautious advice about it.

“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”

A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.

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“For the doctor to know what they need to know about an illegal drug is a very high expectation,” said Dr. Jacqueline French, an epilepsy specialist at New York University’s Langone Medical Center. She said CBD is “driving the conversation” many doctors now have with their patients.

The result of that one-sided conversation, though, is that parents who give CBD to their children must turn to one another and their medical marijuana providers for help. Facebook has become a crowd-sourced doctor’s office. Colorado’s sometimes ragtag community of medical marijuana growers acts as a de facto human services agency.

By not engaging more with providers, doctors often lack an understanding of the types of marijuana products their patients are using and are unaware of the sometimes contradictory advice their patients receive.

For instance, CBD providers commonly tell newly arrived parents that they should reduce the level of an anti-seizure drug called Onfi before starting CBD because the two could have a dangerous interaction. Parents often reduce the medicine without consulting with their doctors. Doctors at Children’s, though, say they haven’t seen conclusive evidence that CBD has an impact on Onfi levels. Meager research makes it impossible to know who is right.

Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.

Leaving Children’s after the first visit, Ana still has questions about CBD. But doctors there have set up several new appointments to address other aspects of Preston’s care. He will soon have a feeding tube inserted into his stomach, allowing Ana to give him food and medicine consistently. She’ll take him to get fitted for a new helmet to protect him in falls.

A plan is taking shape.

“I thought it went really well,” she says.

Parents hope to see progress

Two days later, they’re back again. A blue line squiggles furiously up and down on a computer screen.

Preston is talking.

“Silly mommy,” he says to Ana, as she snuggles into a single hospital bed with him.

“Silly Preston,” she says back.

He leans in to give her a kiss on the cheek. A maroon line on the computer screen jumps to life.

A bundle of 21 multicolored electrical wires poke from the top of a wrapping on Preston’s head, running off the bed and to the computer. Every gesture, every word, every eye blink shows up as activity on the screen, where blue, maroon and green lines measure Preston’s brain activity. It is one answer to the question that has vexed Ana for the past 12 years: What is happening inside her son’s head?

But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still.

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At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.

But, to get a true starting level, the EEG meant Ana would need to take Preston off CBD temporarily. She had spent seven months planning how to get to Colorado for the treatment. She was pausing it after five days.

“The point of this is to get a baseline,” Knupp had told Ana, “so that after you’re on CBD, you can have a baseline to look at.”

While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.

The results from the first batch of CBD kids tested made their way into a study that Knupp and two other doctors will present this week at the American Epilepsy Society conference in Seattle. Of the 58 children tested, 31 percent saw their seizures reduce by half, the study found. About 50 percent of the patients saw at least some seizure reduction.

But the results were ultimately even less conclusive.

The doctors relied on parents to report how much CBD reduced seizures. And that opened the door for the study’s two most intriguing findings.

The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.

But the study also calls into question parents’ ability to be objective. The doctors found that parents who had moved to Colorado for medical marijuana were much more likely to report that it had helped their children significantly than those who were already living in Colorado — 52 percent compared with 17 percent. In other words, the greater the leap of hope it took to try CBD, the more likely a parent was to see progress.

“We worry about all the stresses that families had to go through to start the treatment,” Chapman said. “That desire for it to be effective may cloud their recognition of seizures.”

Supporters of the CBD treatment say Children’s sample was skewed because the hospital might not be seeing the kids doing best on medical marijuana. State health officials have recommended that Children’s receive nearly $1 million in grants for further research.

Even if the treatment is successful, though, no one knows what will happen if kids who have seized their whole lives suddenly stop. Do they develop normally? Or does their underlying condition continue to inhibit their growth?

Including the new Children’s study, the nine studies or surveys looking at whether CBD controls seizures in humans form a scientific crazy quilt.

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They look at different forms of epilepsy, different kinds of seizures and different measurements of success. At least five different types of CBD-rich marijuana therapies are represented in the studies.

The results swing wildly. The studies show anywhere from 30 to 80 percent of children seeing a significant seizure reduction while on CBD. And now even some doctors involved in the research question the findings.

Dr. Edward Maa, an epilepsy specialist at Denver Health Medical Center, worked with the most famous CBD provider in Colorado, the Realm of Caring, and a Colorado Springs medical marijuana doctor on a patient survey — one of the earliest studies on the efficacy of CBD in the state. The study found that nine out of the 11 families surveyed saw at least a 75 percent reduction in seizures. It was an overwhelming success rate.

But now Maa wonders whether families who tried CBD with little success quit using the treatment before they could be included in the study. The Realm of Caring says only one patient had stopped using CBD at the time the survey was conducted. Maa is working on a genetic study trying to determine why some kids respond to CBD and some don’t.

“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”

“An uncontrolled experiment”

A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County.

Public opinion through the years

Public support for the legalization of marijuana dipped during the 1980s, but has grown dramatically in the past 45 years.

In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.

“But they don’t seem to me to be as long,” Ana said.

The CBD oil she was using then was a roughly 35:1 mixture of CBD to THC. But Ana, concerned that she wasn’t using the best formulation, sought out the opinion of a Denver doctor who specializes in making medical marijuana recommendations. The doctor, Alan Shackelford, suggested Ana try a mix with more THC.

“In a way,” he told Ana, “it’s an uncontrolled experiment. Which I don’t necessarily like. But we are pressed into this circumstance.”

So Ana visited her CBD provider, who gave her oil at a 10:1 ratio of CBD to THC, and the next day she watched as her son ate better than he had in months: a plate of fried okra, a plate of potato chips smothered in barbecue sauce, a stick of string cheese, a Frosty and, most surprising of all, tuna salad with crackers.

Preston’s grandmother, Milly, thought he had the munchies.

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“But you have to be careful that you’re not making things in your brain,” she said. “We’re all watching him and his behavior.”

While Preston played later in the backyard August sunshine, his eyes seemed to roar.

The toy was a Slip ‘N Slide, on which he and his sister, Sydney, were supposed to be shooting across the tarp and under an inflatable shark’s mouth that held a spraying hose. Instead, Preston grabbed the hose and became the shark.

His hunting spared no one. He drenched Milly. Sydney escaped back inside, water dripping down her hair. And Preston laughed with such big gulps of air that it sounded as if his own joy might strangle him. Until, suddenly, his laughter stopped.

Preston’s legs folded under him, and he crashed hard to the ground. Milly burst from her chair and ran over to him, reaching him in time to see his eyes roll toward his brows. And then, lying there in the grass he had soaked, Preston began to shake violently.

“It’s OK,” Milly whispered into his ear, trying to talk him out of the seizure. “It’s OK.”

Milly gathered Preston up and sat him on her lap in a chair. He breathed heavily, wheezing in and huffing out. His eyes were shut.

“It’s OK,” Milly whispered again. “It’s OK.”

The shaking calmed.

“We pushed that too far, didn’t we?”

Preston’s breaths grew quieter.

“You were being a big, mean shark. It’s OK.”

His muscles relaxed.

“It was fun, though, wasn’t it, Preston?”

A roller coaster

The seizure — the second grand mal in a week — flustered Ana. And that’s why she finds herself back at the house in eastern Boulder County. Jason Cranford meets her on the porch.

Although he owns a medical marijuana store and several licensed cultivation warehouses, Cranford provides CBD to young patients out of his home under the state’s less-stringent regulations for medical marijuana caregivers. He says it keeps the cost down for patients and also creates a more personal atmosphere.

After he harvests his marijuana plants, he hangs them over the arms of a weight bench in his front room, ready to be trimmed. He extracts the oil in a lab he assembled in his garage. When families arrive, his German shepherd is there to greet them.

Soon, Jason hands Ana new bottles of cannabis oil. This time, he’s giving her one bottle of high-CBD oil and another bottle containing high-THC.

Now she can make any ratio she wants, Jason says. It’s the third formulation change since Preston started the oil six weeks ago.

She asks about the amount she’s giving. “Should I up it?”

“Are you seeing any results?” Jason asks.

Ana’s reply is quiet.

“No. Not yet.”

“Then you need to up it,” Jason says.

In the next week, blinky seizures will overwhelm Preston each afternoon. A week after that, Ana will write on Facebook, “Preston started a new ratio oil yesterday higher THC, today only being on it for the second day we saw 70-80 percent seizure reduction!!! BAM!!!! Bite that seizures!!!!” And then a week after that, Preston will have three grand mals in a day. A roller coaster, Ana will call it.

But for now, she walks back to her minivan and returns home to try again.

She’s learning that when it comes to Preston’s treatment, traditional medicine and marijuana have at least this much in common: There are still far more questions than answers.

Families who brought their sick children to Colorado seeking a marijuana miracle found something else: each other. With doctors largely standing on the sidelines, the parents’ cannabis community offers camaraderie and support as they treat their kids.

Preston loves country songs — the louder, the better.

So, one morning in mid-October, Ana Watson cues up Jason Aldean’s “Big Green Tractor” on her phone and hands it to her 12-year-old son, still in his pajamas. And then something magical happens.

Preston starts singing.

Not so much in words that anyone else would recognize. But, as the notes leak from the purple headphones covering his ears, Preston wah-wahs with the beat.

“BAM!” Ana writes on Facebook. “Cannabis oil doing amazing things for my child, Preston singing big green tractor and no seizures this am!”

Is this finally it?

Four months after they arrived in Colorado — one of hundreds of desperate families moving here for medical marijuana for their children — the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure.

In that time, Preston started feeding himself, using a fork without help. He pushed himself around on his sister’s two-wheel scooter without falling. He remembered to say “Please” and “Thank you.”

It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.

Her new friends in Colorado — parents who, like her, came to the state seeking hope through cannabis — cheered on her social media updates.

“AWESOME!!” one wrote beneath the video of Preston singing.

“Beautiful,” another wrote. “So beautiful.”

How, exactly, that stretch free of grand mal seizures had come about was a bit unclear. In doses four or five times a day, Ana would sometimes mix together 20 times as many drops of CBD oil as THC oil, or maybe 10 times as many drops of CBD as THC, or maybe close to equal drops of both. She had a rough idea of the dosing, but the plan was to be evasive. She believed the technique kept Preston from building up a tolerance to a specific dose.

She also began giving him his traditional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.

So optimistic is Ana that, as Preston’s 13th birthday approaches, she makes a bold decision: It’s time for her son to get his first real bicycle.

Her hopes for a new life seem to be coming true.

Another setback

One week after singing “Big Green Tractor,” Preston suffers a short grand mal.

Then, in the backyard sunshine the Sunday before Halloween, Preston’s eyelids flick up and down from seizures. A drop of drool forms on his lips.

His grandmother, Milly, brings him inside with worry.

“He’s really blinky,” she tells Ana.

Preston’s eyelid flutters pick up speed, jackhammering one after another, and soon Ana is struggling to lift him onto the couch. His legs dangle limply beneath him.

“Jesus Christ,” she says, straining. “Stand up, Preston.”

Moving quickly to the kitchen counter, Ana opens a medicine bag that has dinosaurs and her son’s name on it. Her hand passes over two bottles of amber-colored marijuana oil and instead reaches for one of the six different pharmaceutical drugs also crowding the bag — a nasal spray called Versed that is used in emergencies to head off a grand mal.

“He’s not going to like this,” she says. “He knows it burns.”

Preston’s arms flail as Ana tries to steady his head.

“This is going to make you better,” she pleads with him. “So you can play with your friends at the birthday party.”

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“Buhfday,” he says between seizures.

Today is Preston’s birthday party.

All around him, the house is decorated for a celebration. His little sister, Sydney, had been blowing up balloons and drawing jack-o-lantern faces on them with a marker. Ana had been placing candy eyeballs onto frosted cupcakes.

Fairy princesses and pirates and a Teenage Mutant Ninja Turtle are coming to his home bearing gifts. Like him, many of the kids in those costumes suffer from rare forms of epilepsy. They are the first friends Preston has ever had.

And now, the guests are only a half hour from arriving — and the rescue medicine isn’t yet taking hold. Sydney watches her brother with concern. Ana, returning to the cupcakes, does too.

“Hey, Mr. Blinky,” she calls over to him. “Please don’t seize on me!”

Preston’s bike

The rescue medicine works just in time to stave off another grand mal.

When Ana rolls out the electric blue bike with large training wheels as the big finale to Preston’s birthday party, it feels somewhat like an artifact of her optimism. But she is undaunted.

“That’s Preston’s bike,” Ana tells him, and a smile grows across his face.

On the street, Preston’s grin stretches so wide it looks as though it might push his ears off his head. Sitting on the seat, he shuffles his feet along the ground to inch the bike forward. Sydney and the other kids from the neighborhood whiz by on their bikes, screaming in delight. Preston laughs in heaves. Up and down the one-block street he goes. Step by step. Scooting. Flying.

Ana tries to teach Preston how to ride the bike properly.

“Put your feet on the pedals,” she tells him.

“No!” he insists.

“On the pedals,” Ana says. “See, you can push yourself.”

Preston keeps walking the bike forward.

“Let me show you,” Ana says. “This is how you ride a bike.”

More steps.

“I give up,” she laughs. Her son can ride his bike his way.

A cannabis community

They call themselves refugees.

The hundreds of families moving to Colorado to treat their children with medical marijuana arrive with no guarantees for a treatment that is not scientifically proven to work. But what they have is one another.

Bound by the semi-legality of the treatment they’ve chosen — legal under Colorado law but illegal under federal law — and the hope they’ve attached to it, Colorado’s medical marijuana refugees have built new communities for themselves in their adopted state. They babysit for one another and go out to dinner together and protect one another’s kids from the cold stares of strangers. They talk one another through days filled with seizures and hug when the seizures subside. Some even live together, to split the cost of housing.

Rising hopes

The number of juvenile medical marijuana patients in Colorado has jumped more than 700 percent since last summer. The increase coincided with a highly publicized documentary on one young girl using marijuana to control seizures.

One day, after Ana and Preston went to a brunch with families whose kids also suffer from Dravet syndrome — the rare form of epilepsy that afflicts Preston — another mom posted a photo on Facebook. It was of Preston and her daughter leaning into each other and grinning.

“This was their version of a hug,” she wrote. “Thank you for all the support. This moment in time has been forever captured. Let this be a testament to how wonderful our children are.”

Back home in North Carolina, Ana had been like many parents of children with rare diseases: She lived on a metaphoric desert island. It was years before she met another parent whose child shared the same disease. And, even then, there were no support groups, no play dates, no joint outings to the zoo.

Instead, there was Facebook, where she bonded with Dravet moms in ways that seemed impossible for her to do with the people she met in her everyday life. In Colorado, those moms now come to her house for dinner.

“We just kind of feel like we get each other,” Ana said. “We connect on a level that other moms don’t get.”

This new community in Colorado has generally split into two groups, centered on the state’s two largest providers of marijuana extracts rich in a compound called CBD that the kids take.

The most famous is the Realm of Caring. Its best-known patient — a little girl named Charlotte Figi, who is the namesake of the group’s CBD product, Charlotte’s Web — has been featured in two documentaries and dozens of news stories. Today, the Realm of Caring serves more than 350 patients in Colorado, with an affiliate group in California serving about 150.

“It’s been an amazing support community,” said Charlotte’s mother, Paige. “These were parents who didn’t leave the house.”

Because the Realm of Caring is based in Colorado Springs, parents who move to the state — often inspired by news stories about Realm patients — frequently locate there. That is what Ana did when she arrived in Colorado in late June.

But, by this summer, the Realm’s waiting list topped 10,000 names, forcing some families to seek other options. Many, including Ana, turned to Jason Cranford, a Boulder County man who owns several medical marijuana businesses but chooses to serve young patients out of his home.

Cranford’s group is the Flowering Hope Foundation, and it has more than 120 patients. Its signature strain — Haleigh’s Hope — is named after Haleigh Cox, a Georgia girl who went three years without smiling at her mom or dad. On the emergency flight out to Colorado with her mom, Janéa, Haleigh stopped breathing three times. Soon, as Haleigh slowly improved, Janéa volunteered to schedule appointments for new patients at the Flowering Hope Foundation.

“This is bringing hope to so many families,” Janéa said. “We feel like family.”

Parents from both organizations have led a political movement to push pro-CBD laws in state legislatures across the country. In addition to the 23 states with medical marijuana laws, there are now another 11 states that have legalized CBD in some form. In states such as Alabama and Utah, where conversations about liberalizing cannabis laws never previously received much attention, the families’ stories broke through.

“The power that these parents have is unequaled,” said Dr. Alan Shackelford, a Denver physician who has recommended medical marijuana for many kids coming to Colorado, “because a committed parent trying to help a child can move mountains.”

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But one thing parents can’t do is guarantee whether medical marijuana will help their children. For some, CBD has been a godsend. For some, it has been a dead end.

Despite the positive signs, Milly still worries about which side Preston will fall on. She committed to staying in Colorado Springs for a couple of months after the move to help Ana settle. But the transition had been harder than either she or Ana expected, and when the seizures continued, Milly decided to stay longer. She rented a house near Ana’s.

Sitting at her kitchen table during the stretch of days without a grand mal, Milly thinks about how difficult Preston’s journey in Colorado has been and about how, even now, little seizures continue to shake his brain daily.

Is that progress?

Her thoughts turn to the moment when she first heard about CBD — in the TV documentary where she saw a smiling Charlotte Figi riding a bicycle.

“Looking back on it,” she said, “all we could see was hope and something that was helping these kids. And they were families just like us. That’s what clicked it and made it believable.”

She paused in her thoughts.

“I’m not saying it’s not believable. I’m just saying things are not always — it’s a story. It’s a story. I don’t know.”

Another pause.

“I want it to be true.”

Quiet.

“I want it to be true.”

Preston’s birthday

On his first morning as a teenager — Nov. 1, six days after his party — Preston shuffles out of the bedroom wearing fleece pajamas with dinosaurs on them.

Breakfast is his choice, so he chooses fried potatoes, slices of cheddar cheese and tortilla chips. Milly lights a vanilla-scented votive candle to sing happy birthday to him, and, on the third try, Preston huffs in and blows out the flame.

“How old are you?” Preston’s speech therapist, Beth Clancy, asks him as she prepares for an early session.

Preston looks at her sheepishly.

“Preston,” Milly coaxes, “we’ve been practicing this. How old are you?”

“Two?” he says.

“How. Old. Are. You?” Milly asks again.

There’s a glimmer in his eyes.

“Thuh,” he starts, “EEN!”

Thirteen.

The age of seventh grade — the age, for most kids, of algebra class and essay assignments on “The Call of the Wild” and first awkward school dances.

For Preston, speech therapy this morning begins with an iPad game to identify colors and animals.

“Preston, what says, ‘Meow’?” Beth asks.

He doesn’t answer.

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Next comes Mr. Potato Head, where Preston puts the eyes where the nose should go, the nose where the mouth should go and the arms on backward. But Clancy is encouraged. Despite the mistakes, Preston is focusing on the tasks longer than he used to. He’s listening to instructions, too.

“Yes, ma’am,” he says when she asks him a question.

“There’s progress happening,” she tells Milly. “It’s there.”

But the grand mals are also there again, hitting almost every afternoon the week between his party and his birthday, causing Ana to run low on rescue medicine. Later in the day, she’s watching Preston closely for blinky seizures when her phone rings. She puts it on speaker.

“Happy birthday, darling!” a voice bursts from the phone.

It’s a former nurse of Preston’s from North Carolina, calling to check on a patient who had long ago felt like a grandson to her.

“Are you having a good birthday?” she asks Preston.

“Talk to her,” Ana urges him.

But Preston just smiles, and soon the conversation shifts.

“So,” the nurse asks, “how’s he doing?”

Ana adopts a measured tone.

“He’s been doing OK,” she says. “He’s been having some seizures in the afternoon. But the mornings are good.”

What if this is just Preston’s life?

For the past couple of months, when things were looking up, Ana would occasionally share an inspirational quote with friends online.

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Oct. 6: “No matter how tired you are, no matter how scared and lost you feel, no matter the diagnosis, challenge or fear, no matter how hard things get and the struggles you and your child with special needs will face, you are working from a place of great love … and that will always be enough.”

Oct. 7: “Sometimes God’s power is shown as much in preventing things as it is in making them happen.”

Oct. 16: “Faith is about trusting God even when you don’t understand his plan.”

Then, after the recent setbacks, she posts one of the earliest pictures of Preston from his baby book.

“Today is Preston’s birthday,” she writes. “I am so proud of how far he has come, he is such an inspiration to everyone. He truly is the most amazing little boy ever!! We love you Preston♥♥♥”

A mother’s hope

Ana came to Colorado hoping to find something that would make her son better. But what she found made her love him the way he is even more. And maybe that was the point all along, she would say. That it might have been enough for her just to try. That she loves him enough to never give up on him.

As evening nears on Preston’s 13th birthday, Ana reaches into the refrigerator and pulls out his afternoon dose of CBD. This time, it is not the familiar amber oil in a medicine dropper. It’s a sage-green blob of chilled butter in a mason jar. Another Dravet mom made the infused butter at her home, using marijuana she purchased at a dispensary in Denver, and shared some with Ana.

“This is why I moved to Colorado, to have access to everything,” Ana reasoned. “We’re far from gaining seizure control. We haven’t done any medicine weans.”

Heating up the butter, Ana draws it into a syringe, then walks up the stairs to where Preston is playing.

“Let me see your belly,” she tells Preston.

She attaches the syringe’s tip to the feeding tube that doctors in Colorado had placed into Preston’s stomach. “Boink,” she says playfully when pushing the plunger. Preston totters off to continue playing, and Ana sets the syringe down on a dresser.

“Let’s see what that does,” she says.

In the next three weeks, Preston suffers some of the worst seizures yet in Colorado — fist-balled grand mals during which his clamped jaw is the only thing holding back his grunts from coming out as screams. Ana stops giving him CBD for a time, then starts again with a new formulation made from a different marijuana strain. She takes Preston for a doctor’s visit and asks about the possibility of trying an experimental pharmaceutical drug.

And then the seizures dissipate, and Ana’s optimism returns. She learns she has made it off the waiting list for Charlotte’s Web. She’s excited to give it a try.

She might never hear Preston say “I love you,” but, on the day before Thanksgiving, she hears something almost as sweet.

She asks Preston if he’s hungry.

“I,” he starts.

Sensing something coming, she reaches for her cellphone to record a video.

“What do you want?” she asks.

“Cheese!” he says.

“Cheese what?”

“Cheese, please.”

“No,” Ana says. “I ...”

“I,” Preston starts hesitantly. “I ... I. Want. Cheese!”

Ana is silent, shocked that her son just said a complete sentence. Preston smiles and rocks back and forth with giggles.

Five long seconds later, Ana gathers all of the emotions and hopes of their journey into one burst.

“Good job!”