Ashley Surin of Schaumburg, Illinois, was less than three years old when she had her first seizure. Maureen, Ashley’s mother, was driving down the highway when it happened. “I pulled over and I held her in my arms and I just prayed,” says Maureen. Nine months prior, barely beyond infancy, Ashley was diagnosed with acute myeloid leukemia (AML) and began a rigorous course of chemotherapy. The chemotherapy cured Ashley of her cancer, but for the next nine years, she would experience almost daily seizures—until one of Ashley’s doctors recommended she try medical marijuana.
A May 2017 paper published in Epilepsy Behavior notes that, as far back as the 11th century, “crude marijuana extracts” were a viable medicine in treating convulsive disorders. The paper examined past reports on the effect of marijuana derivatives on people experiencing seizures, finding “the effects of several plant cannabinoids […] in models of seizures, epilepsy, epileptogenesis, and neuroprotection [are] consistent with reports of therapeutically beneficial effects of these compounds in clinical studies.”
More specifically, a landmark December 2015 study published in The Lancet Neurology found that CBD, the nonpsychoactive chemical in marijuana, reduced motor seizures (seizures that affect the muscles of the body) with similar success as other traditional treatments (and 2 percent of those studied became completely seizure-free).
“It has been life changing for us, for her,” begins Maureen. “She can walk better, talk better, think better, process better, interact better, look people in the eye, ask questions. [The benefits] go on and on and on.” Before switching to CBD, Ashley was on a “rolodex of meds,” says Maureen. The medicine made her irritable, lethargic, and sometimes almost comatose. “Sometimes they helped her get through the day, but a lot of times they added more side effects we weren’t happy with,” Maureen says.
After switching to medical marijuana, life improved for the Surins—Maureen says before the switch, they were living with the constant threat of having to rush Ashley to the ER. “I can’t say that there wasn’t a year we didn’t get in an ambulance from 2010 to 2017,” she says. But now, everything is diff erent. “We’re not surviving anymore, we’re living.”
However, the Surin’s trouble was far from over. While medical marijuana may be legal in 33 states, it was still not legal on school grounds, which meant that Ashley’s CBD-THC patch (that she wears on her foot, under a sock and shoe, and is only seen and replaced at home) was against school rules.
Maureen talked to Ashley’s doctor. “[I asked,] isn’t that discriminatory? It’s a medicine, why can’t we bring it to school?” she says. “[I asked,] what if we sue? And [Ashley’s doctor] said, ‘You’ll be helping a lot of children.’ And so I said, ‘Are you on board?’ and she said, ‘Absolutely.’”
The Surins started writing what would become “Ashley’s Law,” allowing eligible students to bring medical marijuana products into public schools, charter schools, and nonpublic schools throughout the state of Illinois. The law took effect on Aug. 1, 2018. “[The] district has been so supportive,” says Maureen. “That just made my heart so happy.”
While a step in the right direction, the law is far from comprehensive. “Any day now we should get a call to go witness the signing of the amendment of Ashley’s Law,” says Maureen. The amendment would allow for more people to administer the medicine as needed (currently, only two are allowed per student) and train nurses on how to properly administer. “The law is getting polished up so when Ashley goes to high school there’s no more wrinkles we need to iron out,” says Maureen.
But if so many children and teenagers are benefiting from medical marijuana, why was this written into law only recently? Marijuana is classified as a Schedule 1 drug—shared by recreational drugs like heroin and LSD. But according to a May 2017 article in the Journal of Pediatric Pharmacology and Therapeutics (JPPT), by 1851, the United States Pharmacopeia had classified marijuana and its byproducts as legitimate medical compounds to alleviate symptoms of conditions like chronic migraines and pain—and epilepsy.
Political propaganda of the 1930s attempted to debunk marijuana as medicine. The JPPT article chalks this up to a mixture of racism and competing fiber industries trying to prevent growth in the hemp industry. By 1970, marijuana had been labeled as a Schedule 1 substance.
For this reason, investigation into practical uses and dosages of medical marijuana has been difficult. Marijuana products are not regulated in manufacturing, packaging, and labeling outside of clinical trials. However, organizations like the American Academy of Pediatrics supports further research into medical marijuana: The AAP website states, “Research and development should be conducted of pharmaceutical cannabinoids. The AAP recommends changing marijuana from a DEA Schedule 1 to a DEA Schedule 2 to facilitate this research.”
There is much anecdotal evidence of medical marijuana improving quality of life. An exhaustive exposé in Time magazine (“Pot Kids”), for example, tells the story of a little girl diagnosed with a neurological disorder that manifested in about 200 seizures per day. Once her parents started treating her with medical marijuana—not yet legal in their state—her seizures dropped to about 20 per day.
In 2015, the CNN story of Charlotte Figi warmed the hearts of many. Charlotte had her first seizure at 3 months old. She would continue to have hours-long seizures, as many as 300 per week, that doctors couldn’t explain. Eventually, she was diagnosed with Dravet syndrome, a severe form of epilepsy that cannot be controlled by medication. When she was five, after exhausting all other options, Charlotte started being treated with an edible oil that was high in CBD and low in THC (THC is the psychoactive chemical in marijuana). Her seizures stopped immediately, and now they only occur two or three times per month.
It is the advocacy work from people like Maureen that will continue to move medical marijuana into the mainstream, making it easier to conduct clinical trials and get proper and safe dosages approved for what some consider a “wonder drug.”
Medical marijuana has given Ashley her life back. Without being allowed to consume the drug on school campus, Ashley wouldn’t be able to learn like other children do: in school, surrounded by her friends, teachers, and activities that will lead her down a path to success. “I don’t know what [Ashley is] going to do after high school, but the door is wide open,” says Maureen. “When you see your kid go from a comatose state to living life actively, you’ll move to the ends of the earth to keep that medicine going.”