On Friday December 5, 2014, my assistant and I took on a venture to Rowlett, Texas to meet an extraordinary medical cannabis advocate by the name of Alexis Bortell (a 9 year old who suffers from Epilepsy). In maintaining the voice of medical cannabis patients in Texas throughout PACT, the Patient Alliance for Cannabis Therapeutics, I was immediately taken in and felt the responsibility to go and meet this young advocate and her family. It wasn't a typical setting for PACT as we're typically occupying one of the public hearing rooms at the Texas State Capitol, but for December's meeting we were compelled to finally host and conduct our first meeting in the Dallas area. While the goal of PACT is to encourage patient support and empowerment, we had no problem in finding it inside this little girl; don't let her age deceive you of the wisdom and strength she embodies.

Before the PACT empowerment meeting which was still an hour or so away, I had the opportunity to sit down with Alexis and her father Dean as we talked of their ordeal. "Okay, I'm going to ask you and your dad a few questions," I said, "so just say what you feel and don't be shy. So to start out, tell me what Epilepsy is."

"It's where you have seizures." She responded.

"So you're affected by seizures." I replied. "When do they happen?"

"Um, usually at night." She said.

Dean followed a bit more in-depth. "She says they're seizures and they happen at night, but it is so much more. Epilepsy is a lifestyle right. You've got the disease which is epilepsy, which is the seizures, but then you've got the medicines, the doctors, the parade of tests, which you're witnessing right now, where she has to wear the wires. It's a whole new lifestyle; the minute you're diagnosed your life ends and a new one starts. So, we've witnessed horrible seizures, we've witnessed ones that have really scared her, which are the ones that hurt me."

In response to my question of how cannabis has helped, Dean stated, "We haven't started medicating yet, we can't. We have the doctor's recommendation, we've done everything from Colorado, she has a Red Card in Colorado, but because of us being so in the front in Texas, we can't medicate because of fear of CPS and law enforcement. So, she is literally stuck in a box where her life is on the line, that's why she's undergoing these tests right now to make sure she's not at risks for sudden unexplained death by epilepsy. They're testing her to make sure it's safe for her to continue."

"Alexis," I asked, "why the need for whole plant medicine versus CBD only?"

"Um, to help everyone instead of a certain amount of people." She stated.

"It's been strange." Dean stated. "We've talked to lots of doctors and if you look through her medical records, which I'll let you because I want you to see them, they have gone back and forth between two conditions, where they say she's got focal epilepsy, which is the type of epilepsy that affects just a certain part of the brain; in her case, the left temporal lobe. But she exhibits "specific times of the day" epilepsy which would point to a different type of epilepsy. They don't usually co-exist and it's made her very susceptible to even the slightest side-effect of pharmaceuticals and even the most benign pharmaceuticals have had catastrophic effects on her epilepsy. We've gone through three neurologists, specifically the pediatric neurologists. We're at Cook's in Ft. Worth now, and so they're still trying to categorize her, they can't and that's why the doctors really think that cannabis with its side-effect profile (which is nothing really) is the right medicine; they all said the same thing."

While Alexis has appeared on the TV news, spoken in front of 2000 people at 2014's DFW NORML's Medical Marijuana March, and in-person with a few state representatives, I had to remind myself that this little girl was very much that, a little girl whose hobbies included playing with her jump-rope, hula-hoop, and playing Mind-Craft. I continued about the interview in asking Alexis and Dean the question, "How does it feel speaking in front of all these people and on the TV news?

"Sometimes I get nervous," She replied, "but it's actually kinda fun!"

"When it first happened," stated Dean, "everyone goes through that first phase of why us, what happened, what did we do wrong? But seeing her in front of the crowds, getting the letters from all these people that are thanking her for speaking on their behalf, I think God put her here for a reason and so for me, it's been more of a witness experience in watching her helping other people; I couldn't ask for more of my daughter. It's an honor to be her dad."

 

In getting to know the Bortell family, it was quite clear to see the number of sacrifices they have had to make, not only in the lives of their daughters Alexis and Avery, but within themselves as a mother and father. "As a parent," I asked, "how has this whole experience made you feel?"

"Well, there are two parts of it." Dean replied. "The epilepsy has really made me cherish the time I have with her, when she's healthy and she's not seizing and not systematic, so I think it's made me a better parent because I appreciate both children more, the health of Avery, and the healthy streaks that Alexis goes through when they have days or even weeks without seizures, more days than weeks. But it's been really frustrating, as a veteran, to see the open discrimination in the medical system. You know, I've served my country which was the USA, it wasn't a zip code. But because we live in Rockwall, Texas, she can't get a medicine that "board certified" physicians (two of them, not one of them) have said, without question, will help her and she can't get access to it because she's in the wrong zip code. That is not why I wore the flag of this great nation, that's not why I served and so, it makes me angry."

"What number of prescription medications has she had to endure?" I asked.

"Between 5 and 10." Dean stated. "The first was Carbamazepine which is like a sprinkle; she don't like taking her vitamins much less pills, right. At that time, you were what? Seven. When you were diagnosed? So you break this capsule open, put it in applesauce, and she takes the applesauce. Her seizures moved from nighttime to daytime then, and so they got worse. They then mixed it with several other drugs and that didn't work. They pulled her off those drugs and then they prescribed a drug called Carbatrol and that didn't work, it just made you sleepy, right? And you still had seizures. We ended up on this drug called Depakote which made her violent. Remember the days when you got really mean? How did Depakote make you feel?" Dean asked.

"Um, kind of drowsy, angry..." Alexis replied.

"She really did turn into a different person, but the real long seizures went away," exclaimed Dean, "we had on one hand a drug that finally started to work on the epilepsy but had so many side-effects, it wasn't safe, we couldn't leave her with her sister and so, they ruled it a failure and we ended up on something called Felbatol. That was the end of the line. That's what led us to starting over and where we are now, at Cooks with Dr. Perry; he's tapered her off all medicines because they think that the side-effects of the pharmaceuticals are doing more damage than good, and so, she's currently got rescue medicines only, when two doctors, as I said "board certified", have said that cannabis would be a totally safe and acceptable treatment."

"In speaking with State Representatives," I asked, "how has the responses been?"

"Senator Bob Doole was on board with medical cannabis and he understood," Stated Dean, "he has a family history in the research area and so he was on board. We've met several who are on board; Alexis has changed some minds. One in particular, we've had some trouble with, and I say trouble, but he just disagrees with us, Republican Scott Turner, whose running for Speaker of the House as you know. Probably what makes this story explosive with people that follow Alexis is the reason he disagrees, a couple them he listed were moral and ethical reasons and I don't think that sat well with people that follow Alexis' story. I understand that he as a person is disagreeing, but he has to remember and I really hope he remembers, that he represents his constituents. It's not about what he personally feels and so I'm hoping that people convince him and he continues to educate himself and evolve on the subject."

"And Alexis, do you have any pets?" I asked.

"Yes. I have 5 chickens and 1 dog." She replied.

"Wow! That's a full house!" I responded as Alexis giggled. "Is there anything that you would like to say to those who are following your story?"

"Thank you for your support!"

"I think when we go into session, they'll see her coming, if they're not seeing her coming already!" Dean stated. "I think your testimony is going to be important; she may be the youngest ever to do it!"

"Well then," I replied, "we'll have to check and make sure the records are correct!"

(Dean smiles and giggles)

Following the interview, we went about getting ready for the PACT Empowerment Meeting as people began to show. We talked a good meeting and while we were expecting 3 families, we actually had 6 families altogether, which in turn, led to some commonalities to be discovered. We headed back to Austin that evening (my assistant and I), but no way was this venture over as we joined the Bortell's the following Tuesday to lobby at the State Capitol. If you are not aware of the story of Alexis, you will be; she's a courageous spirit and if she doesn't capture your heart, then you're clearly not listening! ~

 

ALEXIS BORTELL OF TEAM ALEXIS