Charlotte’s Web: Meet the Little Girl Leading the Fight for Cannabis Oil

BY: RYOT News Deputy Editor Stacey Leasca

THIS POST originally appeared on RYOT.org. Click here to take action

In March 2014, Angela Brown became a criminal.

She didn’t murder anyone. She didn’t drink and drive. She didn’t even shoplift.

Instead, Brown drove from her home state of Minnesota to Colorado, where she was able to legally purchase cannabis oil. Then, she drove back home and gave it to her son Trey, who had been suffering from chronic pain ever since a line drive hit him squarely in the head during a baseball game when he was 11 and caused internal bleeding, subsequent headaches, depression and muscle spasms.

The simple act of driving across an invisible boundary instantly transformed her in the eyes of the law from a caregiver and a mother into a criminal.

Because cannabis oil and medical marijuana are not legal in the state of Minnesota, Brown faced two separate charges: child endangerment and the sale of a controlled substance (the state argued that by giving it to her son she somehow “sold” it to him).

All together, Brown found herself facing a $6,000 fine and up to two years in jail.

On April 16, Brown agreed to a plea deal in an effort to spare her son more trauma, as the prosecution had planned to subpoena him to testify in the trial against her. Ironically, had she waited a few months, she’d be fine. Medical marijuana will become legal in Minnesota in July.

More and more parents are being forced to become criminals in the eyes of the government in order to get their hands on potentially life-saving medication in the form of medical marijuana. Some are going to extremes to help their sick children find help, including becoming “cannabis refugees” and uprooting their families, moving to states where marijuana is legal for medicinal or recreational purposes.

The Brown family will now be counted among them as they too have made the decision to move to Colorado.

Some of those families moved to Colorado specifically to get there hands on a strain of marijuana known as Charlotte’s Web.

Charlotte’s Web was introduced to the market by five men: Joel, Jesse, Jon, Jordan, Jared, also known as the Stanley brothers.

“My brother Joel called a couple of us and was like, ‘Hey what do you think about getting into the marijuana business?’ I thought he was joking,” Jesse Stanley told RYOT on a recent visit to Denver.

The brothers invited us to check out their lab up the road in Boulder. It’s an unassuming building with no real front door. Instead, we went around the back and were greeted cheerfully by their office manager.

Upon entering the building we were smacked with the familiar smell of marijuana, except this isn’t just any marijuana, nor is it the kind any recreational user would be interested in taking.

Charlotte’s Web is a special hybrid bred by the brothers to ensure it has almost no tetrahydrocannabinol (THC), the chemical compound that makes marijuana users feel that euphoric high. Instead, Charlotte’s Web is loaded with cannabidiol (CBD), which has been shown to have several health benefits. Its namesake, Charlotte Figi, suffers from Dravet Syndrome and has seen remarkable improvements in her health since she began taking it.

“Before we met Charlotte, before we met anybody, we had done a lot of our own research and reading on CBD that it stopped the metastasis of cancer, specifically breast cancer and ovarian cancer,” Jesse said.

There is no guess work in the lab. This place is as high-tech as you can get.

The 20 or so young scientists who work for Stanley Brothers Social Enterprises walked us through the method of extracting the oil and processing the plant. They told us about the rigorous testing to ensure the extract never has over 0.3 percent THC. They even showed us a few of the new products they are working on to help a variety of different people.

The product these scientists create is so in-demand that prior to this year, families had to register to be on a waiting list to be eligible to receive Charlotte’s Web. The Stanley brothers would never allow a family to join the program without being able to promise a lifetime supply of the product, because as Jesse said, they would never take a child off of life-saving medicine.

This practice resulted in a waiting list thousands of people deep.

But now, the team has worked hard enough to ensure that every single person on the list no longer has to wait. Not only will people be able to receive it in Colorado, but people around the country can access it as well.

A few weeks ago, the oil the brothers produced was classified as an herbal supplement due to its extremely low THC, meaning it can now be sold across state lines as a hemp-derived food product. It is much like the hemp products you can now purchase at places such as Whole Foods, but with an unparalleled amount of CBD.

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“When she was five years old, we really hit rock bottom with Charlotte,” Paige Figi, Charlotte’s mother, told RYOT while inside her Colorado Springs home.

Figi explained to us that at the time, Charlotte was experiencing seizures every 30 minutes. The family had tried every drug and had failed to see results with any of them. At 5 years old, Charlotte was confined to a wheelchair and could not speak or engage with the outside world. She was put on a do-not-resuscitate order.

According to Figi, Charlotte’s condition was so bad that at some points she wished her child would slip away peacefully to end her suffering.

“We had failed every drug. We had no one left. Everyone was walking out.”

As her very last resort, Figi said she turned to the Stanleys to try their product. After her very first dose, Charlotte showed remarkable improvement.

Today, Charlotte is nearly seizure-free.

When we met Charlotte, it was hard to imagine the pain this child had gone through.

She walked into the home with a smile from ear-to-ear, eager to greet us and our camera.

Charlotte suffered a great deal of brain damage due to the seizures throughout her young life, which makes it difficult for her to speak, but she has no problem communicating in other ways.

As we sat down to paint with Charlotte, she slowly went through her colors, her favorite being yellow.

“Purple,” this small voice would whisper out with a smile. “Orange,” she’d exclaim while showing us her work. She would often take breaks to give hugs or hand us one of the magnets off the fridge, perhaps so we would feel included.

While spending time with Charlotte it became harder and harder to imagine a world where adults could deny children the right to live a normal life because of preconceived notions about the plant they take for medicine.

“Some people are like, ‘Well it should be illegal,’” Jesse said, adding, “well, we’re helping people. At the end of the day that’s what it should be about.”

To be clear, Charlotte’s Web isn’t a miracle for everyone. The Stanleys and Figi will be the first to tell you about the families who tried it and didn’t see the same results.

Some patients need more THC for a better effect; others need traditional pharmaceuticals.

We don’t know what works and what doesn’t because there little to no scientific research on the medical benefits of marijuana.

The funding for such research simply doesn’t exist. Some scientists don’t even want to touch it.

For Figi and other parents who give Charlotte’s Web to their children, it was really guess-and-check until they found the right balance.

Those parents then came together at the nonprofit run by the Stanleys known as the Realm of Caring to not only compare notes and work out dosing schedules, but to also become a community of outcasts just looking to do the right thing by their families.

As Sanjay Gupta noted in his multiple stories about Charlotte on CNN and insubsequent interviews, “policy has outpaced the science” when it comes to medical marijuana.

There are few scientists willing to take on the challenge of studying the plant. There are virtually no banks that will work with medical marijuana producers (according to Jesse, the Stanleys have been dropped by at least a handful of banks even though they don’t technically produce medical marijuana). And there are few politicians willing to lay it on the line to support marijuana reform.

So instead of trying to work around policy, Figi is trying to change it.

She is currently working with Congressman Scott Perry of Pennsylvania onCharlotte’s Web Medical Access Act 2015, which proposes “to amend the Controlled Substances Act to exclude cannabidiol and cannabidiol-rich plants from the definition of marihuana, and for other purposes,” according to the bill’s summary. The bill has 25 bipartisan co-sponsors.

Figi, the Stanleys and others are not fighting for across-the-board legalization of marijuana. Though they aren’t fighting against it. What they are doing is taking one small step to helping remove parts of marijuana off the Schedule 1 list of narcotics.

Marijuana making it onto the list of Schedule 1 narcotics means it has zero medical value, something the Figi family can personally testify against, and also something the U.S. government can apparently testify against since it holds a patent to cannabinoids as antioxidants and neuroprotectants.

“This bipartisan piece of legislation will provide clarity to the existing legal ambiguity surrounding the use of, and access to, hemp oil therapies,” the Realm of Caring explained in a statement on its site.

This is what makes Charlotte, and the children of Realm of Caring so important. It will likely be their faces that change hearts, minds and policy. But for the kids, the real win is just getting to finally experience the world around them.

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