Nothing is more devastating than to be told there is no hope for your child. This is what happened to some of the parents this campaign is supporting. They rejected that diagnosis, and through hard work and financial hardship, they gave their children hope again.
But they are doing it all on their own and it shouldn’t have to be that way.
Thousands of children in Canada, my daughter among them, know the heartbreak of intractable epilepsy. She, her mother and myself, know only too well the hope and despair that comes with each new drug, the Faustian bargains we make. One drug made her gain 60 pounds and lose 90% of her hair the summer before high school. Another was linked to liver damage and “mild” atrophy of the cerebellum. But if there was a chance it would work, it was worth the risk.
So let’s be clear-eyed here when we talk about the risks regarding medical marijuana relative to the risks of intractable epilepsy and the drugs intended to alleviate it. The main argument the medical community uses for doing nothing is that there are too many unknowns and there is too much risk.
But none of the prescription drugs my daughter has taken were ever tested on children, or females of any age. Even for the approved drugs, it’s an educated guess, at best, and the only certainties are the risks. Take Clobazam as just one example. It was one of the earliest efforts to stall my daughter’s seizures. It’s also so addictive that a decade after it stopped working, my daughter needs it every day to prevent the potentially fatal impact of Clobazam withdrawal. I’m sure I would have remembered being told about that life-long side effect at the time, but I may not have asked. I was pretty trusting in those days.
Like the parents of Liam, Kayla, Remington and Z, when everything else failed, my wife and I started asking about medical marijuana. Like them, we felt we were being treated like the tinfoil hat brigade. Even after an entire childhood lost, careening from one failed drug to another and undergoing two surgeries, my daughter has been refused a prescription for medical marijuana by every neurologist who has ever treated her. It’s legal, the right to use it is constitutionally protected, but they refuse. The reason? Too many unknowns, too much risk.
It’s time we call bullshit on that. Last year, in her first meeting as an adult with a new neurologist, my daughter was told her last best chance at controlling her drop seizures was something called “palliative brain surgery.” She was 18-years-old.
Among the risks: permanent paralysis, permanent mutism.
She took those risks. She risked her life. And still, the seizures continue.
So don’t talk to my daughter anymore about risk. What she wants to do now with medical marijuana is what she has been doing with prescription drugs her whole life: see if it works. Her family doctor, who bears witness to our daughter’s suffering, is the only medical professional we have encountered willing to give it a shot.
But the medical marijuana system as it is in Canada now is gamed for failure. Every single company legally allowed to sell medical marijuana requires its own doctors note, even if you have already obtained a prescription for another company's brand. And the dried-only rule forces patients and parents to become amateur chemists, synthesizing the plant on their own into an oil so it can be titrated up and down in the blood with precision like any other finicky epilepsy drug. I applaud the dedication of those parents. Any success they have had in finding a therapeutic sweet spot for their child is something for which they should be rightly proud.
If there is some perfect combination of CBD, THC, THC-A or any other pot derivative or compound, we have yet to find it. I am not the Walter White of medical marijuana. But we have seen too many medical miracles to give up searching this early in the game. That is a risk worth taking.
For these reasons, I support #420forChange.
Written for Lift by Sean O’Malley. Sean is a member of CFAMM (Canadians for Fair Access to Medical Marijuana).
To learn more about the #420forChange campaign, visit www.420forchange.org