by Elizabeth Limbach

This is the story of 12-year old Zaki Jackson, who was diagnosed with Doose Syndrome (a.k.a. Myoclonic-Astatic Epilepsy), a rare form of epilepsy characterized by frequent and severe seizures, when he was 15 months old. With the help of cannabis, he has gone from having hundreds of seizures a day, to being virtually seizure free.

The first thing Heather Jackson did each day for much of her son Zaki’s life was make sure he was still alive.

It all started in September of 2003, when Zaki was just 4 months old. The infant began having strange episodes that baffled his parents. His small body would clench up, and he’d throw his head back. If he was holding a rattle, it was often flicked up into the air. Sometimes it occurred in response to loud noises, leading Heather to believe her son was easily startled.

But it was happening quite a bit by the time Zaki was 6 months old, when doctors took his first electroencephalogram (EEG), a diagnostic test for epilepsy.

“When the doctor’s office called, it was the doctor, not the nurse or the receptionist,” recalls Heather. “So I figured it was bad. He said it was seizures.”

Around 15 months old, Zaki (pronounced zah-kai) was diagnosed with Doose Syndrome, or Myoclonic-Astatic Epilepsy (MAE), a rare, little-understood and grave form of early child-onset epilepsy that is often irresponsive to medication.

The condition progressed to the point, in 2011, where Zaki was having hundreds of brief, violent seizures a day. As his mom puts it, “his brain was under constant assault for the better part of a decade.”

For years, he had also experienced what are called non-convulsive status episodes, which aren’t necessarily visible seizures, at least not as most people would recognize them.

“But the brain is in seizure activity,” explains Heather. “He’d dip into this status where he’d stop talking and walking; he would lose his swallow reflex. These could last a day, a couple of days, a couple of weeks.” If the halt on talking, walking, and swallowing continued, Heather and her husband, Frank, had to feed him fluids through a syringe.

They never knew when the spell would break and who he would be when it did. Years of seizures translated into significant delays — the “collateral damage,” in Heather’s words — that put Zaki at 28 to 41 months old developmentally. A persistent parade of weekly occupational, speech and physical therapies helped some, but any progress could be washed away by a single episode.

“It would set him back months developmentally and all of the hard work we did every day was just gone,” Heather says. “I’d crumble, give up, scream, yell and kick, and then I’d get up in the morning and brush myself off and say, because of him, we’ve gotta continue on.”

In the fall of 2011, Zaki began having chronic seizures called tonics in which he’d cease breathing. Every time it happened, a part of Heather feared it was the end. She awoke every day and habitually looked over to him, where he slept in his parents’ bed or nearby on a makeshift bed on the floor. (Attempts at normalcy — by having him in his own room, albeit with a pulse oximeter monitoring machine — never stuck.) As 2011 came to a close, it seemed that Zaki’s young life would, as well. The family took a Make- A-Wish trip to Disneyworld and tried to cherish the time they had left together.

“We were doing the best we could,” says Heather. “We were enjoying him. We were not focused on death. We were focused on living and trying to be happy. But it’s hard when the first thing you do in the morning is check your kid to see if he still has a pulse. It’s a really difficult way to live.”

After 17 pharmaceuticals were tried, and failed, Zaki’s doctors didn’t have anything left in their bag of tricks.

“Our option was to recycle through the drugs we’d tried, which was definitely not something I was interested in doing,” says Heather. “Every pharmaceutical has side effects, and the drugs they use to control epilepsy are really heavy hitting.”

Some drugs diminished Zaki’s appetite; others made him eat too much. Some caused him to lose sleep; others forced him to sleep all day. He didn’t sweat the entire two-and-a-half year period he was taking Topamax.

“The most successful, long-term therapy he tried was steroids,” his mother adds. “Zaki has bone loss, cataracts. He’s like an old man because of these pharmaceuticals.”

Zaki’s initial diagnosis, nearly a decade earlier, had kicked off an “affair with research” for Heather. Fueled by the fury and fervor of a desperate parent, she investigated every possible treatment and proposed medication. And as each failed to bring her little boy out of the dark, one unexplored option flickered promisingly in the distance.

Swinging her researcher’s spotlight onto cannabis, though, meant overcoming her personal hang-ups.

“This is your brain on drugs.” Like many others who grew up in the 1980s, that was the no-nonsense message — delivered as an egg is ominously cracked into a sizzling frying pan — that informed Heather’s views on marijuana. “I thought cannabis can’t be good for you, that’s for sure,” she says, “[that] it kills your brain cells and it’s addictive.”

As a conservative and a Christian, she was concerned about what her family and friends might think. “Not more concerned, though,” she says, “than I was for my son’s health. Which is why, after I dug into the research, I accepted that it was an anticonvulsant.”

“We didn’t have anything to lose at this point,” she adds.

It was a fortunate coincidence that the Jackson family lived in Colorado Springs, a mecca of cannabis treatment for pediatric epilepsy. It is just outside of this 440,000-person city that Charlotte’s Web is grown, a high-CBD strain that has become particularly popular for addressing epilepsy. Hundreds — 400 by Heather’s estimation — of other families have fled their home states and flocked to Colorado, particularly Colorado Springs, in a quest for safe, legal access to this medicine. The Jacksons needed to drive just 10 minutes from their home to pick up Zaki’s Charlotte’s Web.

Heather was still skeptical when, on July 19, 2012, they gave it a try for the first time. Following the nightly bedtime routine of a bath, diaper, and book, she opened the bottle of Charlotte’s Web extract, filled the syringe with a low dose of the viscous amber medicine (the formula at the time used honey as the base liquid), and squirted it into his mouth. Then she waited, staring at the time on her phone, counting the minutes as they passed. Suddenly, it was morning — she awoke startled, only to realize that Zaki did not have a seizure all night.

Her hope grew when an unheard of 48 hours passed without a seizure. She slowly raised Zaki’s dose over the coming months, and the seizures were sporadic.

Zaki had his last big seizure on Oct. 3, 2012.

“It has literally put his condition into remission,” Heather says, speaking just after the 30-month seizure-free mark.

Without seizures standing in his way, Zaki has made leaps and bounds developmentally. Before trying cannabis he was still, in most ways, a toddler: he had to wear pull-up diapers. He didn’t know his colors or how to write his name. Today, now 12 years old, he’s mastered colors and his name, and is working on the alphabet and numbers. The family is looking for a school for him to attend.

“He’s learning concepts he hadn’t been able to grasp before,” Heather says. “What’s even more exciting is the social aspect — he used to have very severe autistic tendencies. Now he has friends and plays and rides a bike. These might be little things to other families, but to us, it’s huge. He’s living life.”

No longer hampered by his suffering, Zaki’s spirit has burst forth in full force.

“Zaki is a giggler,” his mother begins when asked to describe him. “He’s airy. He’s got the greatest sense of humor. He’s funny. He’s very sensitive, very sweet. He’s extremely active — like the Energizer Bunny. He’s constantly playing, wants to go outside, climb a tree, ride a bike. He’s amazing.”

The improvements Zaki has made because of cannabis have also been life-changing for his parents, who have been together since high school, and his older brother, Zarek, all of whom were also hostages of the condition.

“I just recognized five or six months ago that it wasn’t the first thing I did in the morning to go check on Zaki,” she says. “His healing is allowing our family to heal. Our schedule doesn’t revolve around him and his seizures and whether we can make it to Christmas dinner or not.”

Heather didn’t rest on her laurels with the morsels of spare time this afforded her. Along with Paige Figi, whose daughter Charlotte was the inspiration and impetus behind the famous Charlotte’s Web strain, Heather started the nonprofit Realm of Caring in 2012 to connect families with information and resources.

She tells Zaki’s story, both to the press and through advocacy, in hopes of sparing other families the same extended pain they endured. Although she’s since grown a thick skin, Heather says the criticism this can incur is disheartening.

“You do a news [interview] then you read the comments, and people are mean and ignorant and come from a place of misunderstanding,” she says. “They have not walked in my shoes. I would challenge them to hold their child in their arms while they are not breathing and after you’ve exhausted all of your options, and tell me what they’d do. It’s a plant.”

One of her chief goals is to encourage better research in the field, because “as wonderful and healing as Zaki’s story is, it’s still considered anecdotal evidence.” It’s time an appropriate amount of funding and research was put into understanding marijuana as medicine, she says.

“This isn’t a political issue,” she adds. “This is a human rights issue. I want us to stop making political decisions that could literally be life or death for a family.”