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.”

Related: Medical marijuana credited with progress for Charlotte Figi The CBD boom in Colorado started with a story. There were 35 juvenile medical marijuana patients in Colorado in March 2013, when CNN landed in the state to film a documentary about one of them... Expand this story

Medical marijuana credited with progress for Charlotte Figi The CBD boom in Colorado started with a story. There were 35 juvenile medical marijuana patients in Colorado in March 2013, when CNN landed in the state to film a documentary about one of them. Since infancy, Charlotte Figi suffered from debilitating seizures due to Dravet syndrome. She practically lived at the hospital, where her parents, Paige and Matt, had signed do-not-resuscitate orders for their little girl. Every night when they went to sleep, Charlotte’s older brother and twin sister said their goodbyes to her, not knowing whether she’d be alive in the morning. Then, in February 2012, when Charlotte was 5 years old, her parents gave her CBD, and everything changed literally overnight. Charlotte slept soundly for the first time in years. She went seven days without a seizure. Over time, the seizures dropped from thousands a month to just a few. After not speaking for six months, she started talking again. CBD wasn’t a cure. Charlotte still has seizures, although Paige says she hasn’t had one requiring hospitalization in two years. She has made leaps in her cognitive development, but, now 8 years old, she is only at the level of a 2-year-old, her mother said. But, for the Figis, it was new a dawn: Their little girl was happy again. “I didn’t think she was in there anymore,” Paige said. “I thought that Charlotte was gone.” Paige said Charlotte now takes only cannabis to control her seizures. Despite the ongoing uncertainty over how often CBD works, Charlotte’s story continues to show how transformative the treatment can be when it does work. She is the embodiment of the hope that has drawn families from across the country to Colorado. “I had no idea it would be that big of a deal,” Paige said. “I didn’t understand … that there were this many people who had nothing to try.” Collapse this story

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.

Related: Medical marijuana caregivers in legal limbo in Colorado In mid-September, Jason Cranford sat enraged before the nine members of the Colorado Board of Health. “These children are in wheelchairs!” he shouted, gesturing backward... Expand this story

Medical marijuana caregivers in legal limbo in Colorado In mid-September, Jason Cranford sat enraged before the nine members of the Colorado Board of Health. “These children are in wheelchairs!” he shouted, gesturing backward. “Do you not see this?” Dozens of families filled the rows behind him, evidence of the patient population that has made Cranford the second-largest provider of CBD to kids in Colorado. The Board of Health was meeting to consider putting a cap on the number of patients that medical marijuana caregivers, like Cranford, can serve. But at the start of the meeting, state health department officials had dropped a bombshell: No matter what the board’s decision, all of the families in the room — including Ana Watson and her son, Preston — were obtaining CBD illegally from Cranford. “I saw a serious situation, and I stepped up,” Cranford continued. “Just to be blunt and frank, if you pass this, I’m not going to stop doing this. You’ll have to put me in handcuffs.” Colorado’s laws for marijuana providers are like an onion made out of bubble gum: There are many layers, and each one is sticky. Recreational marijuana stores operate under different rules from medical marijuana shops. Medical marijuana caregivers, who are supposed to provide more personalized attention, have different rules, too. The state’s largest CBD provider, the Stanley brothers, sell their Charlotte’s Web product to families through their medical marijuana dispensary. Cranford also owns a dispensary — and he has developed a line of marijuana cigarettes for the commercial market. But Cranford’s experience with a young cancer patient in 2009 made him a CBD evangelist, and he decided to provide for his neediest patients as a caregiver. If he sold the CBD oil through his dispensary, patients would have to pay sales tax, plus all the included costs to cover the many licensing, security and production expenses that go with operating a medical marijuana business. By operating out of his home, he said he was initially able to provide CBD on a pay-as-you-can basis. At the hearing, families lined up to support Cranford. “The parents I talk to, as soon as they hear costs come out, they start crying,” said Janéa Cox, whose daughter, Haleigh, uses oil from a marijuana plant Cranford named Haleigh’s Hope. Cox helped set up the Flowering Hope Foundation to support Cranford’s patients. Appointments to meet with Cranford are booked eight weeks in advance, and his patient count has swelled with both families on the waiting list for Charlotte’s Web and families who have used Charlotte’s Web but want to try something different. State health department officials, though, worry that large-scale caregivers violate the spirit of the law. With Cranford, they have a more specific concern. According to their reading of Colorado law, the only people who can serve as caregivers to young medical marijuana patients are their parents. “A parent cannot delegate the primary caregiver role to another caregiver,” the health department’s Dana Erpelding said at September’s Board of Health hearing. The announcement — the first time the health department had ever expressed such a concern — baffled Cranford. “Do these kids have to go through my center?” he asked. Cranford’s dispensary is in Rifle, hours west of where many of his patients live. And state rules for marijuana stores would make it impossible to transfer his CBD plants into his store’s inventory. “You can’t act as a caregiver for anyone but your own children,” said Larry Wolk, the health department’s executive director. But Wolk said the health department is not an enforcement agency. Even if Cranford’s CBD operation does violate the law, it would be up to the police to take action. After the hearing, Cranford and the parents remained confused. Finally, Janéa Cox said, “So, we’re going to keep rocking the way we have been.” And Cranford nodded. Collapse this story

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.

Related: Colorado brothers are at the center of medical marijuana boom At the brand-new office and lab space for the makers of Charlotte’s Web, photos of smiling children rest on the floor, waiting to be hung... Expand this story

Colorado brothers are at the center of medical marijuana boom At the brand-new office and lab space for the makers of Charlotte’s Web, photos of smiling children rest on the floor, waiting to be hung. Three dozen lab employees — with more being hired — work with sophisticated equipment to produce standardized formulations of CBD oil. In another room, hundreds of tiny marijuana plants take root, part of a breeding project the brothers behind Charlotte’s Web hope will yield new cannabis products that can do for other diseases what they’ve already done for epilepsy. At this new facility in Boulder, Joel Stanley is unapologetic about his organization’s ambitions. “How else are we going to take care of hundreds of thousands of people unless we build an industry around this?” he says. But those same ambitions have increasingly led to conflict and to one notable misstep. Today, the organization shows both the optimism and the conflict of the CBD boom. A charismatic clan of seven brothers, the Stanleys have often found themselves near the spotlight during the five-year history of Colorado’s medical marijuana industry. In 2012, the brothers starred in a reality TV show called “American Weed.” But it was after Joel met Paige Figi in early 2012 — and agreed to provide Figi’s daughter, Charlotte, with CBD oil — that began their period of greatest renown. Figi and another mom, Heather Jackson, soon formed a group called the Realm of Caring, which supports families using Charlotte’s Web. As attention around CBD grew, the waiting list for Charlotte’s Web ballooned to more than 10,000 names. “To have all those people who need help and waiting,” brother Jared Stanley said last summer, “that is really difficult.” So the Stanleys decided to go outside the medical marijuana system. Because some of the Stanleys’ marijuana strains can be grown with below 0.3 percent THC, they qualify as hemp under Colorado’s laws for marijuana legalization. So, last summer, the Stanleys planted 17 acres of cannabis plants in eastern Colorado. More ambitiously, the Stanleys and the Realm of Caring began telling patients that they could soon ship CBD to all 50 states, based on an interpretation of a federal law that makes certain hemp products legal in the United States. “We’re not encouraging people to move here any longer,” Joel Stanley said last spring. After the crop’s October harvest, though, the Stanleys received a new legal interpretation. In an e-mail to those on the Charlotte’s Web waiting list in late October, Joel Stanley and Heather Jackson announced that they would not ship Charlotte’s Web this year because doing so could be illegal. Families who had been waiting anxiously at home would now have to move to Colorado. “I just wanted to start out by apologizing for telling you that we could do something that we eventually were not able to do,” Jackson said during a subsequent webcast question-and-answer session. Stanley said the group still expects to take 3,000 patients off its waiting list. The misstep is emblematic of the complications that have grown along with the Stanleys’ profile. Their bank last summer closed the accounts for Stanley Brothers Social Enterprises, the parent company for the family’s dispensaries, after reading in news stories that the brothers are in the marijuana business. Thieves tried to break into the Teller County greenhouse where they grow some of their Charlotte’s Web plants. And the brothers say they are nearly broke trying to keep the business running while providing marijuana oil as cheaply as they can to young patients. In all written materials produced by the Realm of Caring, the Stanleys now include a conspicuous “TM” trademark symbol after the name Charlotte’s Web. Since the start of the CBD boom, two other companies not connected to the family have filed federal trademark claims for “Charlotte’s Web” for use in alternative therapies. Jesse Stanley said the family’s eventual goal is “to put Charlotte’s Web in as many products as possible,” and Joel Stanley says he has no qualms about the family’s investment, despite the unsettled science around CBD. “I’ve seen too many people have a dramatic turnaround in their life that this can’t go away,” Joel Stanley said. “That would be a horrible thing. I believe the science will eventually catch up.” Collapse this story

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.