Christy and Mark Zartler, ASA 2018 Courage Award
For Christy Zartler, the breaking point came four years ago when her 14-year-old daughter’s neurologist announced that he’d exhausted all the pharmaceutical treatments available. For ten years, Christy and her husband Mark had been struggling to control Kara’s severe autism with conventional medications.
But all the benzodiazepines and antipsychotic medications the doctors had tried had failed to stop her self-injuring behaviors. She was rendered near catatonic by the medications but still hit herself in the face as many as 3,000 times each day, at times breaking bones and inflicting injuries on anyone who tried to restrain her. Yet Christy and Mark knew there was an alternative that did work for Kara. It was just illegal in their state of Texas. So off Christy went to Austin to lobby lawmakers for a medical cannabis law.
Four years before, thanks to the intervention of a Good Samaritan neighbor who offered a medicated cookie, they had discovered that cannabis could stop Kara’s self-injuring behaviors. Since then, they had been quietly using it as an intervention when her fits grew bad. Now, with Kara’s neurologist admitting defeat, they had decided it was time to more fully integrate cannabis into her care. And it was also time to try to change the law in Texas.
When Christy got to the capitol and looked around the room filled with 50 other activists, she saw not just patients of every type but other parents.
“I thought, we’ve got moms here. We’re going to get this done right now. I was wrong,” Christy says.
Trip after trip to Austin to talk to lawmakers took time and money, but the Zartlers were determined to make a difference for their family and others like them. If anyone asked Christy, who is a nurse practitioner, if they were giving Kara cannabis, she told the truth. They were, and it worked 100 percent of the time.
The same was true in their community. Kara does not speak but goes to school, and her teacher and the school nurse noticed big changes in her as soon as the cannabis treatment started and asked what had changed. The Zartlers told them, just as they shared their decisions with Kara’s pediatrician, neurologist, and physical therapist. Each of these professionals was under legal obligation to report the Zartlers to the authorities, but none did.
“Kara’s condition is so severe, and the benefits are so dramatic, no one really questions what we’re doing,” says Christy.
Then in February 2017, with a promising medical cannabis bill pending in the state Senate, Mark went very public. He videotaped one of Kara’s self-hitting fits and his intervention: a cannabis vapor-filled bag administered through a medical mask. In the video he posted to his facebook page, almost immediately Kara stops hurting herself and visibly relaxes. Within hours it went viral, producing a torrent of attention. A local news station saw it and contacted them to do a story, then two more and the Dallas Morning News. After seeing the video, a representative from south Texas immediately introduced in the state House a companion medical cannabis bill to one pending in the Senate.
Within 48 hours, Mark had to move the video to a new page for Kara and enlist the help of local patient advocates to field the deluge of messages from other parents and patients.
Then came the knock from Child Protective Services.
Under Texas law, giving an illegal drug to a minor is classified as child abuse, and CPS had reason to believe Mark was abusing his daughter. Ultimately, the investigation was resolved, perhaps largely, Christy says, because Kara’s case is so challenging CPS didn’t want to take responsibility for the risks of caring her. Biting can be a consequence of restraining her, and because Kara also has cerebral palsy, if her teeth lock down it can do real damage. A bite to Christy’s hand before they started the cannabis treatment had sent her to the hospital with a cellulitis infection that nearly resulted in amputation.
Kara turned 18 last November, and this March, the Zartlers had to go to court for a guardianship hearing. They knew the cannabis therapy would be an issue, so they reached out to the reporter for the Dallas Morning News who had written about their predicament before. Her article about the hearing dominated the front page of the paper.
In May, the Zartlers traveled to Washington, D.C. for ASA’s National Unity Conference and Lobby Day meetings they had scheduled with their Congressional representatives, including Representative Pete Sessions. As chair of the Rules Committee, Rep. Sessions has actively blocked votes on many critical cannabis bills and amendments, including the DOJ spending rider that protects participants in state medical cannabis programs, so the Zartlers were eager to meet with him. Christy had called weeks ahead to make the appointment and reconfirmed twice that they’d be meeting in person. But when they arrived at his office, he was nowhere to be found. Christy posted a message of their disappointment on Kara’s facebook page and thought little more about it.
Within minutes, the phones in Rep. Session’s office were ringing with the first of what would be hundreds of phone calls from concerned citizens.
The Saturday morning after their return home to Dallas, Christy Zartler answered the phone to discover Rep. Sessions personally calling to arrange a meeting.
“I told him he could do something right now to show good faith,” Christy says. “Pass the CARERS Act out of the Rules Committee, and we can talk.”
The Zartlers recognize the power of public advocacy and are courageously sharing their family’s story with the world, despite the lack of legal protections in Texas. They have sent letters to Presidents Obama and Trump, and to Michelle Obama when she was First Lady, urging action. But they understand the risk.
“Anyone with children should use caution,” says Christy. “CPS can be dangerous to your family.”
But by being public, they have also been able to attract support and share it with others.
“The religious community has been wonderful,” says Christy. “They see the plant as something God put on earth to help Kara.”
Now that Kara is using cannabis consistently, she has weaned off most pharmaceutical medications and has had profound cognitive improvements. She no longer needs diapers and has begun to assert herself.
“She is a person now. She has a personality with needs and wants,” says Christy, who is more determined than ever to spread the word.
“I wear my t-shirts from advocacy groups to the store. Little old ladies will come up and whisper that they know it works because Sanjay Gupta told them so.”
The family’s videos on facebook and youtube have reached an even wider audience, with hundreds of millions of viewers who have seen for themselves what this plant can do for desperate cases such as Kara’s.
“Cannabis can make miracles,” Christy says.
This profile was originally published in the July 2018 ASA Activist Newsletter
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