Marijuana

Charlotte's Web: Untangling One of Colorado's Biggest Cannabis Success Stories

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Ronnie called the number for Realm of Caring listed on the YouTube video and, after he'd secured a medical marijuana card for Eric, Paige and Amanda showed up at his door on April 28, 2013, with Eric's first dose of oil made from Charlotte's Web -- free of charge. That night, Ronnie and Jennifer inserted fourteen drops of the oil into the feeding tube that ran into Eric's stomach. After a single seizure the next day, Eric's seizures went away.

"I was amazed," says Ronnie. Like many parents of kids on Charlotte's Web, he began volunteering with Realm of Caring. It was like they were all part of one big, growing family, and he wanted to help spread the word. He staffed Realm of Caring's booth at the Capitol Hill People's Fair that June. Then, after a CNN documentary titled Weed spread Charlotte Figi's story across the nation in August (Eric was filmed as well, but he wasn't included in the program), Ronnie volunteered to answer the calls that flooded in from parents with sick children. As one of the first patients after Charlotte and Zaki to receive Charlotte's Web, Eric was featured on Realm of Caring's website -- in a story describing how, for the first time in 21 years, he was smiling and playing with his mother's hair.

But then Eric developed complications; he began secreting clear mucus from his mouth. Such secretions can be a serious problem for those with severe neurological conditions, since they can lead to aspiration and pneumonia. When Ronnie asked people at Realm of Caring whether other patients had experienced secretions, he never got an answer. He'd become used to long conversations with Joel and Amanda Stanley, but now he couldn't get his phone calls or e-mails returned. "They seemed so willing to help at the beginning, then all of a sudden it all went away," he remembers. And then, sure enough, a few weeks after the CNN documentary aired, Eric ended up in the hospital with pneumonia. At the same time, the Prines ran out of Charlotte's Web. When Ronnie asked for more, no one at Realm of Caring responded for several days; finally, he was told that the group had stopped delivering. So Ronnie drove two hours to one of the Stanley brothers' dispensaries in Colorado Springs while his wife waited with Eric at the hospital.

The lack of communication wasn't the only change. After months of being seizure-free, every now and then Eric would have a seizure again. Ronnie noticed that on the lab results that came with each batch of Charlotte's Web, the oil's amounts of CBD and THC, the psychoactive component, seemed to be shifting; he wondered about the medicine's potency. And it was no longer free: The price for a few ounces had gone from $100 to $200 to $350 and then, finally, $700.

By now, Ronnie had stopped volunteering with Realm of Caring. He didn't like the group's failure to respond to his queries, and he didn't like being told that he couldn't have conversations with parents calling for information until they'd signed a non-disclosure agreement. "It was sad," he recalls. "You had parents calling you from everywhere, trying to get the medicine, and I couldn't talk to them."

By this past spring, Eric was becoming bloated, as if fluid was building up in his body. Then his secretions turned milky white. Finally, in late April, he began having trouble breathing. His parents rushed him to Saint Joseph Hospital in Denver, where doctors found that his liver wasn't producing enough albumin, an important blood protein. Soon they also diagnosed him with a bacterial infection, one that he would never recover from. On May 10, as Ronnie and Jennifer sat quietly in Eric's hospital room, the doctors took their son off life support. Eric was buried on May 17, 2014 -- his 23rd birthday.

They received a condolence card from Realm of Caring, but no one from the organization attended Eric's funeral. Amanda Stanley was there, but by that point, she no longer worked for the nonprofit. And Ronnie was surprised recently to see that Eric's story is one of only two original accounts no longer on Realm of Caring's website; the other is about a child who was kicked out of the program after his mother provided medicine across state lines. (According to Realm of Caring, Eric's story was probably removed to add a newer account.)

Ronnie no longer wants to know whether, after allowing his son to live nearly seizure-free for almost a year, Charlotte's Web caused Eric's secretions and his final illness. "If Charlotte's Web contributed to it, that would mean I helped cause it," he admits. "I don't want to know if that was the case."

But he still feels let down by Realm of Caring. "It's almost like you're a family member, and then you're not a family member anymore," he says. "I think they got a little too big too quick. I think they tried to spread themselves too far before they helped the ones they started with."

Ronnie isn't the only one worried that people are getting tangled in the Charlotte's Web saga. While the story of this seemingly miraculous marijuana plant has gone international, spurring parents to move to Colorado to obtain the oil and prompting legalization efforts across the country, concerns are mounting about the famous strain. Parents are facing off against parents, activists are squaring off against activists, nonprofits are clashing with nonprofits -- and suddenly, one of the greatest success stories to come out of Colorado's marijuana movement isn't looking quite so miraculous.

Continue to keep reading about Charlotte's Web, one of Colorado's biggest cannabis success stories.
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Joel Warner is a former staff writer for Westword and International Business Times. He's also written for WIRED, Men's Journal, Men's Health, Bloomberg Businessweek, Popular Science, Slate, Grantland and many other publications. He's co-author of the 2014 book The Humor Code: A Global Search for What Makes Things Funny, published by Simon & Schuster.
Contact: Joel Warner