Communication has been a problem, she and her colleagues concede. While what's now known as Stanley Brothers Social Enterprises, the for-profit side of the operation, boasts 36 employees who grow and process the plants, Realm of Caring, the nonprofit side, has just four employees and a team of volunteers to handle the hundreds and hundreds of inquiries coming in every week. They're working on being more responsive, working to explain why producing and distributing Charlotte's Web isn't easy. Still, Paige knows their efforts won't stop the growing antagonism, won't stop Facebook groups like "Realm of Caring -- WARNING PAGE," which now has more than 3,000 members, from popping up. She thinks some of the bitterness is driven by people envious of Charlotte's Web success, folks who'd like a piece of the action. As Heather Jackson puts it, "When you are out front, you get a lot of arrows in your back."
But Paige also recognizes that anger is inevitable when you're working with parents of children so sick that every day is a struggle for survival. When you're dealing with trauma like that, it's almost easier to find something to rail against, someone to blame. People once used social media to spread the miraculous story of Paige and her daughter; now some of them are using it to attack her and her colleagues. "I get it -- I'm a mother," says Paige. "It is very emotional for these people when they think there is nothing left to try."
Not too long ago, Paige was at that point herself. Her daughter Charlotte, born in 2006, has Dravet syndrome, a rare but extremely serious form of epilepsy, one that buffeted her with hundreds of grand mal seizures each week and left her functioning at the level of a newborn. None of the drugs or therapies that Paige and her husband tried seemed to help Charlotte. Then in 2011, they heard about Jason David, a man in California who was treating his son's Dravet syndrome with medical marijuana. It took months to find doctors willing to sign off on Charlotte's medical marijuana card, months to find a dispensary willing to provide her with product. Eventually, however, Paige was connected with the Stanley brothers, dispensary owners who had been growing a high-CBD strain to treat adult cancer patients that they called "Hippies' Disappointment" because it was so low in psychoactive THC.
Oil made from the strain also helped Charlotte -- so much so that her seizures dropped to just a handful a month. The brothers, inspired, renamed the plant "Charlotte's Web" in her honor. This was the story -- the little girl whose recovery shocked everyone; her well-spoken, passionate parents; the six clean-cut brothers who helped them -- that caused CNN chief medical correspondent Sanjay Gupta to announce that he'd changed his mind about weed in that August 2013 documentary, triggering a media onslaught ranging from a TEDx talk to a Time magazine feature to an appearance on The View. Soon there were other stories of parents like the Figis who were fighting for this unconventional medicine, other stories about children like Charlotte who were taking the Stanleys' oil and experiencing near-incredible recoveries.
Those stories led to skyrocketing demand for Charlotte's Web -- without enough product to go around. According to Realm of Caring, there are now more than 12,000 people around the country on its wait list to receive Charlotte's Web -- compared to just 350 or so patients, mostly children, who are actually receiving oil made from the strain, at five cents a milligram, to treat epilepsy and other ailments. Since marijuana can't be moved across state lines, most of those on the wait list can't obtain Charlotte's Web now anyway. That's why many are moving to Colorado or California, where the country's first Realm of Caring licensee began operating earlier this year. So far, 115 families that have moved to Colorado are using Charlotte's Web, and 135 more new state residents are scheduled to receive their first batch of oil in the next month. But that still leaves a lot of families waiting -- more than 3,900 in Colorado and California alone.
According to the Colorado Department of Public Health and Environment, as of September 30, 427 minors in Colorado were approved to use marijuana -- up from 160 last November. Since the CNN documentary aired, Children's Hospital Colorado has seen a surge of new pediatric epilepsy patients. "For us, the children who were moving here to Colorado were really complex cases," says Kevin Chapman, a neurological specialist at the hospital and a professor at the University of Colorado Denver. "Not just seizures, but they were having problems with swallowing, feeding, cerebral palsy -- medically complex kids. And many of them showed up at our doorstep without any previous medical records, other than what parents could recall."
Every Sunday in Colorado Springs, caregivers Mark Pedersen and Regina Nelson hold a potluck at their home for new "marijuana refugees," as they're called, providing the parents with information on how to correctly dose their children with oil, how to find support services. "Parents are coming here with little or no money," says Pedersen. "I have to tell them: Be prepared. If you don't have some sort of group out here or someone to help you, it can be very hard."
Tommy Turner didn't have anyone to help him when he and his fourteen-year-old son, Coltyn, arrived in Colorado on March 4, 2014, looking for Charlotte's Web. Two years earlier, Coltyn had been diagnosed with Crohn's disease, a debilitating form of inflammatory bowel disease that left him dangerously sick, in extreme pain, stunted for his age and so weak that at times he was confined to a wheelchair. Tommy and his wife, Wendy, had put Coltyn through a gauntlet of expensive, painful medical treatments, with nothing to show for it. When they heard that medical marijuana could help with Crohn's disease, they decided to give Charlotte's Web a try. After Realm of Caring didn't respond to their e-mails or phone calls, Tommy decided to take a desperate step: He packed Coltyn into his Ford Focus and drove to Colorado, leaving Wendy and their two other children in Illinois. "I figured if I go knock on their door, they are going to help us," Tommy remembers.
But when they arrived at Indispensary, the Colorado Springs dispensary owned by the Stanley brothers that distributes Charlotte's Web, the Turners were told they couldn't be helped because they weren't part of Realm of Caring. Tommy and Coltyn spent a week driving around the Front Range, looking for other options. Tommy even bought some pot from a Denver recreational marijuana store and tried to cook it into oil in their hotel room as Coltyn sprayed Febreze to mask the smell. Then, finally, Paige Figi responded to one of the e-mails they'd sent from Illinois. She walked them through the registration process that, once Coltyn had his medical marijuana card, would designate Realm of Caring as his caregiver. That meant the organization would be responsible for growing the 24 marijuana plants he was allowed by his doctors.
After that, while the rest of the family moved to Colorado, they waited. They're still waiting today. "It takes three to four months to get medicine," says Wendy Turner. "Why do we have to wait so long to get our plants?" Eventually, the Turners found another caregiver who's been providing them with high-CBD marijuana; a recent colonoscopy indicated that Coltyn's once-ravaged colon is almost completely healthy.
Moriah Barnhart moved to Colorado Springs last December with her three-year-old daughter, Dahlia, who'd been diagnosed with an aggressive brain tumor, hoping to obtain Charlotte's Web. The two spent months waiting for Realm of Caring to let them know their oil was ready, but it never happened. The only product that Moriah was able to obtain was four small syringes of high-THC oil donated by Phoenix Tears Foundation, an organization providing cannabis to cancer patients. Finally, after six fruitless months in Colorado, she and her daughter moved back to Florida. "It was just awful," she says of her time in Colorado. "We were basically stuck at home with no income and no savings. We were left stranded."
Heather Jackson, now CEO of Realm of Caring, understands how frustrating the wait list can be for parents. "Not being able to serve families immediately, that does bother me a lot," she says. One of the main reasons for the lengthy wait times, she explains, is Charlotte Web's semi-annual harvest cycle, with a new crop planted every March and October. So if a family like the Turners signs up after the March planting, their son's assigned plants wouldn't even begin to be grown until the following October.
In the meantime, families like the Turners aren't allowed to grow their own; Realm of Caring doesn't release tissue cultures of Charlotte's Web so that others can try to grow it -- not even to parents on the wait list. It's partly for patients' own safety: "I don't know how many stories I've heard of people in Colorado, California and Washington blowing up their kitchen trying to make cannabis oil, but it does happen," he notes. But it's also to protect the operation's proprietary investment and the product's credibility. "A trademark is there so a buyer can verify the source of a good," says Joel. "And when you are talking about a product that can save a life, when you are talking about something that important, every consumer should have the right to verify the source of that good."
"If they just gave their plants away to anyone, there are many things that could go wrong," echoes Liz Gorman, a Realm of Caring parent, in a statement provided by the organization. "First, someone else may grow it differently, not grow it organically without pesticides and try to pass it off as the same Charlotte's Web that we have access to for our children. If any child were to be harmed by consuming oil extracted improperly or from a plant that isn't grown the same way and with the same attributes, it could negatively impact the Stanley Brothers' ability to make our medicine."
Denise Lovett would disagree. The parent of a child with intractable epilepsy living in northern California, she was excited to learn late last year that Realm of Caring would be opening a California wing. But after she heard that the operation had a policy of not distributing tissue samples, she removed her son from Realm of Caring's wait list. From what she'd learned while researching the medical marijuana scene, it was common practice for caregivers to share pot clones and seeds with those in need. "The one strain that helps sick and dying children, they are going to hang on to that one?" she asks. "It just blows my mind." She's still looking for an alternative, still looking for someone who can provide high-CBD cannabis oil for her son. But she's willing to wait until she finds the right caregiver for him.
"I need to find people who really love the plant," Denise says. "I don't need someone who wants to set themselves up as the next Walgreens of cannabis."Continue to keep reading about Charlotte's Web, one of Colorado's biggest cannabis success stories.