AUSTIN — Alexis Bortell will tell you she’s a pretty normal kid.The 9-year old from Rowlett enjoys cartoons, playing with her younger sister and playing golf. Yet in addition to the usual concerns of a kid her age, she’s also fighting a life and death battle against epilepsy.
Alexis’ father Dean Bortell, a U.S. Navy veteran, says Alexis’ first seizure happened at their Rowlett, Texas home in July 2013.
“We were folding clothes and all of a sudden I hear my wife scream,” said Dean. “I look over and Alexis has literally gone vertical. She’s stiff as a board and mom’s holding her. We get her down on the couch and she’s shaking.”
The Bortells rushed to a nearby hospital, and doctors eventually diagnosed Alexis with epilepsy. Dean says the prescribed medication Carbatrol was “like throwing gasoline on a fire.”
“It was terrible. Her seizures went from mainly at night to around the clock,” said Bortell. Even more frustrating, Bortell says the next drug Depakote gave Alexis tremors, spasms, and altered her personality — and the seizures still came. Alexis describes the episodes as “very scary.”
“I kinda black out, and sometimes I start chomping and shaking,” she said.
When the pharmaceutical complications resulted in doctors finally ordering the medications tapered off, Dean viewed the decision as an admission of failure. The Bortells now rely solely on a supply of rescue medication, and Dean worries whether it will be enough to save his daughter if her condition suddenly worsens.
“If the big one does come, what are we going to do? I mean that scares us more than anything,” said Bortell.
Desperate, the family happened to catch ‘Weed 2,’ the second CNN documentary hosted by Dr. Sanjay Gupta focused on the medical science of marijuana — also known as cannabis. The documentary details the use of oils and tinctures developed from marijuana plants to stop the seizures without the harmful side effects of powerful — and profitable — pharmaceutical medication.
The Bortells were soon doing their own research; consulting with neurologists and paying visits to Colorado, where the company Dean works for is based and where medical marijuana is legal. On the advice of doctors there, Alexis was able to qualify for and obtain a state-issued “red card,” which allows doctors to prescribe her marijuana-based medication.
“She is a legal patient in Colorado,” said Dean. “She has been evaluated by two specialists who believe medical cannabis is her best shot at a normal childhood.”
But there’s a problem.
The Bortells can’t use the medication as long as they live in Texas, which bans both the medical and recreational use of marijuana. Texas imposes even harsher penalties for possession of oils and tinctures, the forms most commonly used by those taking marijuana for medical purposes. What’s more, the Bortells could be punished for seeking marijuana-based treatments out of state.
Alexis isn’t taking no for an answer.
With the help of a “Team Alexis” Facebook page and branded merchandise to fund the effort, Alexis has taken the growing medical marijuana movement in Texas by storm. A YouTube video of her firing up activists in Dallas shows her ability to effectively deliver the message far exceeds her size: “I don’t wanna leave Texas. I’m a Texas girl!”
“At first you think you’re kinda nervous, but it actually gets kinda fun for me,” Alexis says of public speaking.
Yet her greatest task is ahead: convincing Texas lawmakers this session to legalize medical marijuana in her home state. Alexis joined other activists Tuesday at the Texas Capitol for the first of several visits planned in order to lobby legislators to their cause.
“There are others when it comes to childhood diseases, from epilepsy to autism to cerebral palsy, MS, muscular dystrophy.” said Vincent Lopez, director of patient outreach for the Texas Chapter of the National Organization for the Reform of Marijuana Laws. “It’s across the board on the number of conditions that are out there.”
Lopez, who suffers from muscular dystrophy, led Alexis and other patients through the Capitol Tuesday. As medical cannabis is taken more seriously nationwide, organizations on both sides of the political spectrum have been consolidating their efforts in Texas with Lopez’ help. The Bortells say they never expected to become advocates — least of all for medical marijuana.
Meanwhile Alexis is focused on getting the medicine her doctors say she needs. She hopes members of the 84th Texas Legislature — many of whom she met Tuesday — listen to her message.
“It would be a big deal,” said Alexis. “It would be amazing.”
It’s also a race against time. Dean says even though Texas is home, they simply can’t wait forever.
“When the gavel falls in May, we’ll know if we have to leave Texas,” summed up Dean.
(Texas: Fight to Legalize Marijuana Led by 9 Year-old Girl | WF News | Article Credit: Mark Wiggins, KVUE 11:42 a.m. CST January 22, 2015)