The Stanley Brothers

> by kathryn krawczyk

But a few months later, the seizures started again—and they haven’t stopped since. Now 18 years old, Mariah has tried about 20 different medications and even a high fat, low carbohydrate ketogenic diet to manage her epilepsy.

From left: Joel Stanley, Mariah's sister, Mariah Kelly, Christina Bowen Kelly

“I think everything deserves a fair shot. I’ve tried medicines not just once but twice for her,” Bowen Kelly said, “Nothing has given her enough control without side effects.”

Some other medications would cause Mariah to sleep all the time, and others would prevent her from even being able to walk on her own. Since Mariah experiences many different types of seizures, some medications would get rid of one kind but induce another. Many of the medications Mariah has tried haven’t been FDA-approved for use on children.

Right now, Mariah is living under the haze of three risky drugs.

“If I give her an overdose accidentally of one of her medications, it’s going to kill her liver. If I give her an overdose of another one, it’s going to put her into a coma.” Bowen Kelly said. “If I keep her on these medications, I’m probably killing her. As parents, we’re damned if we do and damned if we don’t.”

For the Kelly family, who live just south of Holland, NY in Chaffee, taking care of Mariah is an around the clock job. She can’t use the bathroom or bathe alone, or even hold a pen to write. And it’s not just the seizures and medications detracting from Mariah’s quality of life; it’s also hard to deal with the isolation and high chance of injuries.

So when Bowen Kelly heard about Heather Jackson, whose son Zaki became seizure free with the help of medical marijuana, she knew it was something she needed to try for Mariah.

At the time, medical marijuana still hadn’t been legalized in New York State. And even though Mariah’s neurologist was supportive of the idea, there was just no way Mariah could try this promising medication. Bowen Kelly said the family even considered moving to Colorado where medical marijuana was legal, but it would’ve been nearly impossible to uproot their lives and move without even a job waiting when they arrived.

In July of 2014, things started looking up for the Kellys. That’s when the Compassionate Care Act was signed into law, effectively legalizing the use, growth, and distribution of medical marijuana in New York.

The law seemed like an immediate victory for families like the Kellys. But one year later, Mariah still hasn’t even been able to try the treatment that her mother believes could change her life.

That’s because the Compassionate Care Act came with a lot of red tape to cut through. It will allow for just five facilities in the state to legally grow medical marijuana, and each grower can operate four dispensaries throughout New York. 43 organizations turned in applications and a hefty application fee of $210,000 ($200,000 of which will be refunded to those not granted a license) by the due date of June 5.

Now they’re all waiting for the lucky licensees to be revealed. The announcement from the New York State Department of Health is expected sometime this month. In the meantime, however, no one can grow their own medical marijuana in-state, and it cannot be imported from another one.

Though these requirements were put in place to ensure safe, high quality medical marijuana, they’ve left patients with an immediate need in the dark.

The Department of Health also committed to having marijuana dispensaries ready by Jan. 5, 2016, a nearly impossible deadline to meet considering that it takes about five months to even grow the plants from a seed. Growers also have to order special equipment from Europe that takes about a month to ship and install. And since this marijuana isn’t smoked like recreational marijuana, they have to use a complicated extraction process to get the plants’ oil that patients can use.

One of the applicants, H2Gro Greenhouses in Lewiston, recognizes the challenge it’s facing.

“That’s a yeoman’s task considering people don’t even have licenses yet, let alone have facilities built,” said Gary Smith, Chief Operating Officer of H2Gro, at a press conference on July 10.

Right now, H2Gro’s 12.5 acre greenhouse is filled with hydroponically grown tomatoes. However, if it receives a license, H2Gro will become Herbal Agriculture.

Herbal Agriculture is making more changes than just its name. Even though it hasn’t heard anything regarding its application, it’s already torn out many of its tomato plants to make room for the marijuana plants. It’s also started retrofitting its facilities with irrigation systems, lights, blackout curtains, and humidity and heat control in preparation.

“If we didn’t go at risk and start early, we would never make that Jan. 5 deadline,” Smith said. “If you’re starting from a field right now, you’ll never make it.”

Herbal Agriculture isn’t the only applicant ahead of the game. Butler Evergreen has started turning an 80,000 square foot building in Wayne County into a medical marijuana growing and processing facility. It’s also planning to establish four Well Centers to distribute medication in Buffalo, Rochester, Syracuse and Binghamton.

While Butler Evergreen is producing its own strains of medical marijuana, H2Gro will be growing one that’s tried-and-true: Charlotte’s Web. The Charlotte’s Web strain was developed in Colorado by the Stanley brothers, six medical marijuana entrepreneurs. It’s named for Charlotte Figi, a young girl who was the first to try the strain and went from having hundreds of seizures every week to one or less. Today, 3,600 people are using Charlotte’s Web through the Stanley Brothers’ Realm of Caring Foundation, according to its executive director Heather Jackson, and it’s had similar results in patient after patient.

Now, the Stanley brothers are bringing Charlotte’s Web to New York. They’ve partnered with Herbal Agriculture, making it the state’s exclusive grower of Charlotte’s Web. Three of the brothers were present at Herbal Agriculture’s press conference, and they’ve all committed to help Herbal Agriculture by providing their expertise whenever it’s needed.

When deciding who was going to carry the Charlotte’s Web legacy in New York, the Stanley brothers set up a strict vetting process. Joel Stanley, the oldest of the brothers, said they didn’t just look for someone with horticultural knowledge and experience.

“We also found very good people and very good hearts that were willing to go out of their own pockets to start learning about this, so they could start immediately and help those who are waiting here in New York,” Stanley said.

But no matter how reputable and successful Charlotte’s Web may seem, there are still skeptics who don’t believe medical marijuana works. Stanley understands their concerns.

“Nine years ago, when the idea of medical marijuana was brought to me, I laughed, to be honest. Everything in my mind about it came from the war on drugs, came from fear propaganda, and came from a dogmatic and unscientific approach to this plant,” he said.

What many don’t realize is that medical cannabis isn’t the same as its recreational counterpart. Marijuana is comprised of two main ingredients: THC and CBD. THC is the psychoactive part of the plant that gets users high, while CBD is non-psychoactive, medicinal part. Medical marijuana like Charlotte’s Web is specifically grown so it’s high in CBD and low in THC.

Likewise, when the U.S. government classified marijuana as a schedule 1 drug, it lead many to believe it shared similar dangerous effects with other schedule 1 drugs like heroin and LSD. However, marijuana has no toxicity and it is impossible to overdose on it. In fact, Bowen Kelly said it’s got a much better track record than the pharmaceuticals Mariah is on now.

Stanley also pointed out that even though there’s not much scientific research, marijuana’s success stories are proof enough of its medicinal potential.

“The anecdotal evidence now is so overwhelming that the medical community really has to take it seriously, and that’s beginning to happen,” he said.

One member of the medical community who really takes medical marijuana seriously is Dr. Laszlo Mechtler, Medical Director of Dent Neurologic Institute and Chief of Neuro-Oncology at Roswell Park Cancer Institute.

“I’ve done research for 25 years on different disorders, usually research on medications is driven by physicians and scientists,” Mechtler said. “The exception to the rule is medical marijuana, which is driven by families—from individuals who have seen patients improve outside the realm of science. These individuals are changing medical marijuana as we know it.”

Like many other prospective growers, Herbal Agriculture has set up a medical advisory board which will be headed by Mechtler. This board will make it easier to conduct research on medical marijuana, since past studies have been limited and poorly done due to legal restrictions.

Even now, there’s plenty of evidence that suggests medical marijuana is a viable option. An American Academy of Neurology Publication found that in the 23 states where medical marijuana is legal, over 64 percent of patients with intractable epilepsy had a more than 50 percent improvement of their seizures, while 16 percent had no seizures at all.

History also points in medical marijuana’s favor. It’s been used as a treatment for various diseases and disorders since prehistoric times, and even the famous neurologist William Gowers used cannabis to treat epileptic patients back in the late 1800s.

Still, there needs to be scientific research to back up how and why medical marijuana works if it’s ever going to be considered a legitimate medicine. And while marijuana is widely known to work for diseases like multiple sclerosis and spasticity, there’s even less research for conditions like chronic migraines and PTSD.

“It’s not a question of does it work,” Mechtler said. “We have to prove it to you all... and most importantly the politicians.”

There’s no point in researching medical marijuana if no one will be able to use it legally. Only 23 states and the District of Columbia have legalized it so far, and it’s not legal from a federal standpoint. One cannot cross state lines with marijuana, or even receive cannabis treatments at federally-funded institutions like VA hospitals.

But the patients who so desperately need medical marijuana cannot wait any longer. According to Jackson, someone dies every 10 and a half minutes from a seizure-related death, whether it be from an accident, pharmaceutical side effects, or a seizure itself.

It’s these kinds of statistics that worry Bowen Kelly every day.

“I just want my kid to be alive next year, for God’s sake. I don’t want her to drown in the bathtub. I don’t want her to fall and hit her head. I don’t want her to have this seizure in the night that I don’t hear that kills her,” she said. “These are the nightmares we live.”

If medical marijuana was even able to simply free Mariah from the pharmaceuticals she’s on now, Bowen Kelly feels it would be a huge victory for both Mariah and the entire family. And that would be just one success story—medical marijuana has the potential to treat patients with a variety of diseases and disorders.

“If I had to choose to win the lottery or to have legal medical marijuana so close, I’d choose the marijuana. That’s how life changing it would be,” Bowen Kelly said. “We shouldn’t have to lose another kid waiting.”