Dear Mr. Sessions,
Meet my thirteen-year-old son Calvin. He was born missing a significant portion of the white matter in his brain, a heartbreaking idiopathic anomaly. He is legally blind, non-verbal, incontinent, and needs great assistance to do the simplest things. He is also the purest, most affectionate soul on earth.
When Calvin was eighteen months old he began having seizures, the worst of which did not initially respond to a bevy of emergency medication. My husband Michael and I were left helpless and grieving at his bedside kissing him goodbye when the forty-five minute seizure finally stopped.
For the past eleven years Calvin has continued to suffer thousands of seizures despite taking high doses of ten powerful antiepileptic drugs—sometimes as many as four at a time—and two rigorous dietary treatments. The sedative drugs have stunted his already protracted development, and their sometimes paradoxical side effects have wreaked havoc with his behavior.
Three years ago, when Calvin was suffering frequent (every week or two) early-evening grand mal seizures—often while in the bath—and after some extensive research, I began treating Calvin with a homemade, non-psychoactive THCA cannabis oil. Since reaching a therapeutic level of the oil, Calvin has had only three daytime grand mal seizures in over 900 days. Moreover, in that time Calvin has been able to safely reduce his dangerous and addictive benzodiazepine, clobazam, by over ninety-five percent.
When I read that you said, “medical marijuana has been hyped,” it was clear to me that your position is one that stems, at the very least, from ignorance. I invite you into our home to spend some time with our boy and to witness our experience. For some children with catastrophic, medically resistant epilepsy, cannabis is their only hope. I wager you'd be hard-pressed to remain a skeptic if you spoke with parents of children who were literally dying from the effects of hundreds of weekly seizures until they received cannabis oils that stopped those seizures in their tracks. And while children like my son benefit from concentrated oils that can be precisely titrated, some adults who suffer from conditions like multiple sclerosis and Parkinson's disease often get relief from their symptoms by smoking or vaping marijuana.
You might be apt to suggest that cannabis is not safe or effective or that we don’t know the dangers of its side effects or its interactions with other drugs. I'd counter by saying that the same can be said of the pharmaceutical medicines some of our children currently take. Some drugs have debilitating and dangerous side effects, others have unknown longterm side effects, while still others have known lethal ones. Some pharmaceuticals are highly addictive and lose their efficacy due to habituation. Many, if not most anti-epileptic pharmaceuticals, are psychoactive. Not all of them have been studied on little children, and yet they are prescribed nonetheless.
Cannabis has been a lifesaver for many children with the most severe cases of epilepsy. Cannabis has immensely improved Calvin’s quality of life, and thus ours. We now have a much calmer boy who takes far fewer drugs, who can now, for the most part, walk by himself, who sleeps well at night and is learning to express himself.
I hope that you would not make reckless judgments about a subject that it appears, as evidenced by your statements, you know little, if anything, about.
Sincerely,
Christy ShakeMe and Calvin, Photo by Ann Anderson |
Sigh
ReplyDeletePerhaps you could recuse yourself from meddling with this issue too. Let the markets work their medical marijuana magic, and let people like Mike, Christy, and Calvin lead decent lives despite the hand they were dealt.
ReplyDeleteExcellentt!!!! I hope your letter wakes up him up..!! and nice to invite him over... Hope he accepts...
ReplyDeleteWonderful letter, Christy. I hope you get a considered reply. Maybe you should also send this to the Portland Press Herald?
ReplyDeleteAbsolutely agree. I voted for him and Trump and support most if the agenda. This I seriously disagree with. They have no issue prescribing adderal which is,basically meth !! I was injured permanently by an fda approved device and suffer at 44 what no one should. Many of us out there. Do they realize we don't get high we get better !!! These same people who govern this will go have a drink tonight which solves nothing.
ReplyDeleteExcellent letter, but I fear it will be an alternative truth. But good luck Christy, and enjoy his visit ;-)
ReplyDeleteI have no idea how I missed this... so beautifully written, and an accurate portrayal of many of our feelings and concerns as parents of children suffering with epilepsy.
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