Alexis Bortell: Survivor & Medical Cannabis Warrior

By DJ Reetz

It’s hard to scare Alexis Bortell. She’s faced a terrifying medical condition that had doctors baffled and resulted in seizures so severe and unstoppable that in one particularly grievous instance she dipped close to entering diabetic shock. She’s faced treatment options that ranged from medications with severe side effects to invasive brain surgery. She’s faced starting her life anew in Colorado simply because the treatment that she found most effective was illegal in her home state of Texas. She’s faced self-important yet ill-informed lawmakers who dismissed her success and questioned the morality of giving a child cannabis medicine. She’s faced so many daunting things, it’s almost hard to believe that she hasn’t yet faced being a teenager.

At the age of seven, Alexis had her first seizure. With no history of epilepsy in the family, her parents assumed the worst. “I was sure she had brain cancer,” says Dean Bortell, Alexis’ father. The family had recently moved into what Dean describes as his dream house on the edge of a lake in Texas, and the possible explanations for Alexis’ seizures were terrifying. After swimming in the lake nearly every day, the idea that Alexis had come under attack by one of the brain-eating amoebas that were the subject of an increasing number of local news reports loomed in Dean’s mind.

“Strangely, it was a relief. Of all the things it could have been — besides nothing — epilepsy was the best,” says Dean.

But the clear-cut diagnosis came without clear-cut solutions. Alexis’ doctors, despite their best intentions and information, could find nothing that would help in a meaningful way. “We went down this rabbit hole of drugs and we end up on a drug called Depakote,” says Dean. Depakote, while partially effective in stymieing Alexis’ frequent seizures, came with its own host of side effects, chiefly erratic and aggressive behavior. “It was bad, she would completely wig out with Depakote,” says Dean.

Doctors informed them that these outburst were taking the place of seizures, but they were troubling enough that Dean made sure to keep any knives out of reach for fear that Alexis would harm herself or her younger sister, Avery.  

Alexis before and after cannabis therapy.

Alexis says she doesn’t remember a lot from this time in her life. While the drugs were minimally successful in treating her epilepsy, they did little to restore her childhood. At the same time that the Bortells faced the seemingly hopeless prospects of treating Alexis’ condition, elsewhere cannabis medicine was making serious headway in mainstream culture. CNN’s special report, titled simply “Weed,” had raised national awareness of the potential treatment that cannabis offered for patients suffering from epilepsy, and it was the follow up “Weed 2” that opened Dean’s eyes.

Dean, a Navy veteran with conservative leanings, hadn’t considered the possibility. His squadron spent a small portion of their time in the Navy trying to impede drug smugglers, and he was working as a software engineer for a company contracted to work in the health care industry, neither of which lent itself to the idea of cannabis as medicine, especially for his young daughter. But after his wife Liza showed him a recording of “Weed 2,” Dean began to reexamine his position

“I went to bed that first night thinking, ‘What if they’re telling the truth?’” says Dean. “Everything I’ve been led to believe, both in the health care industry and out, is maybe not a lie, but certainly not complete.”

The documentary tells the story of the Wilson family, who emigrated to Colorado from New Jersey to find medicine for their sick daughter. It was a revelation for Dean. “I wasn’t against it, I was just wrong about it,” he says. “I didn’t necessarily have anything against it, I just never thought I’d give it to my child. Never.”

In a turn of serendipity, Dean had recently begun working for a company with operations in Denver, though he continued to work remotely from the family’s home in Texas. He decided that he would rent an apartment in the Denver area, which would allow for the residency requirements that Alexis would need to get her medical marijuana referral, a contingency that the family could fall back if things continued going poorly in Texas.  

The Bortells were soon awash in the world of medicinal cannabis, something they knew almost nothing about at the time.

“We thought we could just pay cash, get her seen by the best doctors and know what she needed to take, when she needed to take it — that level of granularity,” says Dean. Only having familiarity with the CNN series, Dean sought out the one variety of medicine he knew of: Charlotte’s Web.  However, they soon found that the strain was not widely available, and they were forced to examine other options.

Throughout all this, Dean is clear that at no point did the family bring cannabis medicine out of Colorado. “We could have went and gotten marijuana for [Alexis} and took it back to Texas. But we didn’t, because if we had it would have been a scandal,” he says. Still, the fact that Alexis had a Colorado red card made the family a target in Texas, says Dean.

Alexis, not yet 10 years old, found herself at the center of an issue that she didn’t ask for, but that she would shoulder nonetheless. The family had carved out an otherwise ideal life in Texas, which included a beautiful home, friends and a place in their church, but found that because of the avenue they were pursuing to treat Alexis they were no longer welcome. “People would say, ‘Why don’t you just move?’ What if people had said the same thing about women voting?” Dean asks. “A lot of my hyper conservative — not friends anymore, obviously — they would make the argument for private property rights then tell you to move in the very next breath.”

Thrust into the fight for medical cannabis, Alexis and her family soon found that those elected to represent the citizens of Texas were often uncaring to the plight of those same citizens. Alexis points to then Texas State Rep. Scott Turner as a particularly egregious example, who claimed he had serious moral and ethical concerns about cannabis medicine.

“Medical cannabis is a plant, but it’s [also] a community that does amazing things, and I’m not sure why he would basically call a community … immoral,”

“Medical cannabis is a plant, but it’s [also] a community that does amazing things, and I’m not sure why he would basically call a community … immoral,” says Alexis. When it is suggested that perhaps this is because Rep. Turner is a douche bag, she giggles and sheepishly replies, “That’s what I wanted to say.”

Then, in February of 2015, the dynamic changed. A particularly bad episode brought Alexis to the hospital, where doctors found themselves powerless to stop her from seizing. The incident was so sever that her blood glucose levels dropped low enough that she was in danger of entering diabetic shock, says Dean. After a terrifying night in the ER, Alexis was presented with two options by the neurologist: brain surgery or Felbatol, a drug with potentially deadly side effects that include blood poisoning.

Facing these options, the family consulted Alexis’ pediatrician, who had been her primary physician since before her diagnosis. While Dean is adamant that Alexis’ pediatrician did not explicitly recommend that she pursue cannabis medicine, their visit solidified the way forward in his mind. “After that conversation, the take away was 100 percent clear that I had a fundamental choice,” he says. “I could either go with a drug, Felbatol, that had a statistical enough chance of killing my daughter [that] I had to sign waivers for a black box warning for her to even pick it up, versus marijuana, which had never killed anybody. The worst that could happen is we’re right back to where we stared.” 

Two weeks later, the entire family had moved to the apartment outside of Denver.

Now, Alexis continues her fight to expand access to medical cannabis, though she is doing so from the slightly friendlier climate of Colorado. Now 11 years old, she has been seizure free for two years, and she’s looking to expand the discussion and advocate for those who cannot advocate for themselves. “I want to fight for the patients. I’m trying to help the people that can’t speak,” says Alexis. She’s not alone in her medicine either. Last year, Dean also began using medical cannabis to treat a traumatic brain injury he sustained while serving in the Navy years ago.

“Who from my family should die,” she asked, “me or my dad?”

That passion recently brought her to a meeting of the Colorado House of Representative’s Finance Committee, where House Bill 1220 was under discussion. The bill would create a state-wide limit on the number of marijuana plants allowed in private residences, and the hearing drew an unruly crowd of cannabis patients and advocates. Testifying before the committee after listening to more than three hours of testimony supporting the bill, Alexis explained that she her father required different strains, and that the proposed limit would not allow them both to grow the medicine they needed at home. After hours of loyal drug warriors decrying the current limits, 11-year-old Alexis took the microphone, addressing the incredulous committee. “Who from my family should die,” she asked, “me or my dad?”

The committee’s de facto reply: it would have to be one of them. The measure easily passed the committee and later the House.

Alexis’ assessment of this tone-deaf solution to the black market by lawmakers is simple and straight to the point. “Criminals don’t care what the law is,” she says.

Now, on the 35-acre farm the family lives on outside of Larkspur, that bravado and confidence isn’t as apparent. Instead, Alexis seems like a typically shy 11-year-old girls. She loves drawing and working on the farm, where the family has set aside eight acres for her and Avery to source organic produce that will go to individuals in need as part of their charity, Patches of Hope, an idea that is also tied to cannabis patients. “Some patients, they don’t have a lot of money, so they have to choose between food and medicine. I want to help out and just make food for them,” says Alexis. “They can home grow [cannabis], and a lot of people are already doing that.”

Not content with simply educating ignorant lawmakers, she’s even co-authored a book. Titled “Let’s Talk About Medical Cannabis,” it’s a project she’s been working on in some form for nearly the entirety of her time as a medical cannabis patient, having written what she describes as nearly an entire book prior to this one. “I was going to write it a lot about me, but as I kept writing it a lot of other names started to pop in,” says Alexis.

“Cannabis isn’t a bad, dangerous drug; it’s a plant that in my case saved my life,” she says. “Taking cannabis is better for my health than dying.” 

“Let’s Talk About Medical Cannabis” weaves Alexis’ own narrative with the politics of advocacy, home growing advice, and much more. It’s all been reviewed by experts in the field of law, politics and cultivation, says Dean. She even manages to get in a few digs at the politicians that turned their back on her, including Rep. Turner.

The book will be unveiled at the Southwest Cannabis Conference taking place April 22-23 in Fort Worth, Texas, where she will also be a keynote speaker, kicking off a country-wide book tour. The choice to begin the tour in Texas was Alexis’ choice, a tribute to activists Vincent Lopez, who stood with her at many of the events that made up her early days of advocacy in the state before his passing in 2015. The book is dedicated to Lopez’s memory, and Alexis hopes to give the first copy to his mother.

While traveling cross country, Dean’s respect for the law won’t allow the family to bring any cannabis medicine, however. Instead, Alexis will be medicating before short jaunts on a plane, bringing only her doctor-prescribed Marinol with her.

Despite this perhaps slightly precarious arrangement, Alexis remains dedicated to the cause of spreading awareness for the benefits of cannabis. For this incredible girl, dispelling the myths about cannabis looks to be a calling that will remain with her for the rest of her life. “Cannabis isn’t a bad, dangerous drug; it’s a plant that in my case saved my life,” she says. “Taking cannabis is better for my health than dying.” 

The possibility of returning to Texas full time should the laws there change is fading from Dean’s mind, though they still own property where they’d like to spend time if the laws were to change. In the mean time, the home they’ve found in Colorado seems an increasingly good fit, and Dean says the state has earned his loyalty. As for Alexis, her involvement in politics at such a young age is certainly setting her up for future civic contributions. Dean’s pride in his daughter is clear when he says, “If she ever runs for office, I hope it’s in Colorado.”

 

 

 

 

 

 

 

 

 

 

 

 

 

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