It’s been more than a year now since Zaki Jackson suffered his last seizure. The 10-year-old Colorado Springs boy has Doose Syndrome, a rare form of epilepsy that strikes in early childhood and is extremely resistant to pharmaceutical medications. Zaki’s seizures started when he was just four months old. He was diagnosed with Doose two months later. By the time he was five, Zaki (pronounced za-KAI) had suffered through some 500,000 debilitating seizures, according to his mother, Heather Jackson.
At 10 years old and 17 pharmaceutical medications later, Zaki was still enduring as many as 200 seizures each and every agonizing day. But he was lucky to live in Colorado, a pioneer in using medical marijuana to treat seizures caused by severe forms of epilepsy like Doose and Dravet syndromes.
After Heather had tried numerous alternative treatments for her son, including chiropractic and acupuncture, the self-described conservative Christian turned to medical marijuana. Specifically, Zaki was medicated with an orally administered tincture produced from a strain called Charlotte’s Web. It’s low in THC, the main psychoactive component of the cannabis plant, and high in cannabidiol (CBD), which possesses many therapeutic benefits. One of these is dramatic seizure reduction or, in Zaki’s case, seizure elimination.
Charlotte’s Web has been described as the perfect strain of medical marijuana for use among children, since it offers powerful relief without the intoxicating side effects of higher-THC varieties. Named after Charlotte Figi, a 6-year-old with Dravet, the strain was developed by the six Stanley brothers – Joel, Jesse, Jon, Jordan, Jared and Josh.
Heather Jackson works tirelessly to help families navigate the pitfalls of medical marijuana law and regulations so their ailing loved ones can get the relief they so desperately need. Jackson recently sat down with The Medical Marijuana Review to discuss Zaki’s dramatic improvement and the future of medical cannabis.
MediReview: How is Zaki doing?
Jackson: He’s doing fantastic.
MediReview: He’s been seizure-free for over a year now?
Jackson: Yes, he has. We’re going to be approaching our 16-month anniversary.
MediReview: What does he like to do for fun these days?
Jackson: He’s very into playing with his train. He asked for a longboard for Christmas. He’s trying to ride a skateboard. He really enjoys riding his bike. He’s just your typical boy trying to figure out what kind of trouble he can get into.
MediReview: I imagine he had trouble doing many, if not all, of those things before he started his medical cannabis treatment?
Jackson: Absolutely. He was pretty sedentary because of the number of seizures he was having. He could walk and he could talk a word or two, but not much more than that.
MediReview: Did you move to Colorado from somewhere else in order to seek medical cannabis treatment for Zaki?
Jackson: Fortunately, we were already living here since I was six years old.
MediReview: In Colorado Springs? That’s a pretty conservative corner of the world. Have you ever experienced any stigmatization or disapproval from family, friends or employers due to your choice to treat Zaki’s seizures with medical marijuana?
Jackson: It’s a really conservative place, and I am actually a pretty conservative, Christian person myself so I’ve had to really educate myself [about medical marijuana]; that’s all it really takes. I haven’t received any backlash, at least not to my face. Everyone’s really been overwhelmingly supportive, especially family and friends who know what we’ve been through. They get it. They see the difference in Zaki.
MediReview: Did you have to win any of them over, or were they immediately receptive to the idea of treating Zaki with Charlotte’s Web?
Jackson: I think that they needed to see some results. It’s kind of interesting because Zaki tried 17 different pharmaceutical treatments and never once did I feel the need to ask how anyone felt about [medical marijuana]. I just did my research on it with my doctor’s permission and everyone was really supportive.
MediReview: You can’t really argue with the success of going from 200 to zero daily seizures.
Jackson: Well, sometimes people do. I’ve met some general public resistance. We’ve done fairs with [my non-profit patients group] Realm of Caring… one gentleman’s wife once said to her husband, “Show her your badge.” I thought he might be some sort of a federal agent. They were pretty opposed. He said, “If that’s what you want to do, fine. I just don’t understand why you people need to be standing out here talking about it.” There are always people who are just uneducated.
MediReview: Is Zaki aware of the controversial nature of the medicine he’s taking? Is he aware of any of the other aspects of marijuana use?
Jackson: No. He doesn’t understand. To him, it’s just his medicine.
Photo courtesy Heather Jackson