Liam McKnight, a 6-year-old Canadian suffering from epilepsy, is legally allowed to use marijuana to ease his severe symptoms—but only if he smokes it.
Since he was 9 months old, Liam has been battered up to 60 times a day by a series of violent convulsions. He has been diagnosed with Dravet syndrome, a rare and severe form of epilepsy, and at times has to endure “seizure clusters,” a stop-and-start drubbing of the body that in the worst cases causes him to lose consciousness for hours. But though Liam is licensed by the Canadian government to use medical marijuana, regulations stipulate that he must smoke or vaporize the weed, or suffer without it.
His mother, Mandy McKnight, told The Daily Beast that the laws regulating how her son can ingest the medical marijuana are absurd.
“My 6-year-old is not going to smoke cannabis,” she said. Instead, as his health has worsened, his parents have risked legal penalties to provide him with marijuana oil extracts they believe will provide a respite from his suffering.
“He can’t [legally] have a derivative such as an oil,” Mandy said. “I wish that [the Canadian government] would just allow kids like Liam an opportunity to have access to marijuana derivatives.”
Health Canada, the federal health agency, said in a statement Monday that the use of marijuana resin or oil is not permissible.
Three times Liam’s has become so ill that paramedics requested a helicopter to airlift him from the soccer field near his house in Constance Bay, a small community on the outskirts of Ottawa, Canada, to the nearest hospital.
“He has gone weeks without talking because of the constant seizing,” Mandy said. The convulsions rob her son of his memory, and he must constantly relearn how to do small things such as how to hold a pencil or how to feed himself.
In 2012, Mandy McNight and her husband, Dave, went to a conference on Dravet Syndrome in Minnesota, where they met a father who was treating his child with marijuana oil. There is little medical evidence behind the use of cannabidiol (CBD), a component of marijuana, to treat seizures. But anecdotes about the use of marijuana to treat seizures are common, and in their desperation over Liam’s condition, they tried it.
“At the time that Dave and I decided to go down the road of marijuana, Liam had endured devastating, catastrophic seizures, and they were only getting worse. There was nothing left. We were going to our neurologist, and we just sat there in her office…there’s no new treatment, no new medications, nothing,” Mandy said.
On June 19, the day Liam received his first dose of high CBD marijuana oil, he had 67 seizures. The next day he had one. And then, Mandy said, Liam went 10 days without a seizure. He was able to go to the beach, to the park, and even to his kindergarten graduation.
The whole process has turned the family into amateur pharmacologists, operating in legally dubious zone.
“It’s certainly a chance we’re willing to take. I see how this helps Liam. This is my son,” Mandy said. “We have a duty to help him.”
The McKnights purchase their marijuana legally through a licensed dispensary and send it to Montreal for processing. The resulting oil is sent to a lab in British Columbia so that it can be analyzed to see how much cannabidiol it contains. The family then estimates an appropriate dose, based on suggestions from other parents whose children suffer from Dravet syndrome. They use a strain of marijuana low in THC, a psychoactive component associated with the euphoria of the drug.
Health Canada said clinical trials on marijuana oil have not been conducted. Scientific testing, the agency said, would ensure “that the best interests of patients are protected and that the drug is administered in accordance with national and international ethical, medical, and scientific standards.” A manufacturer, physician, or treatment center can apply for a clinical trial on extracts of cannabis at any time.
The McKnights say the urgency of their situation doesn’t allow them time for science or trials. Their observations of their son’s improvement after using marijuana oil, they say, obliges them to demand immediate access to the derivative.
“I don’t have time for a clinical trial. I don’t have time to wait for science. It’s a risk that we have to take,” Mandy said. MRIs recently showed that Liam was suffering from brain damage due to frequent seizures. “I don’t think marijuana is going to be a cure for my son, but I think it’s a treatment. And he deserves it. We’ve worked tirelessly to find a treatment that gives him a break, to just be a kid.”
The federal government has not responded to their pleas to legalize marijuana derivatives. Health Canada told The Daily Beast it would not comment on specific cases, including the McKnights’. The family’s pleas to their local representative, the minister of health, and the prime minister have “been completely ignored,” Mandy said.
“I don’t understand why our government is so reluctant to allow kids like Liam an opportunity for a viable treatment that could change his life. Liam’s life is in their hands.”