Liam Kelleher is a tousle-haired, brown-eyed 10-year-old who teases his parents at the dinner table, is obsessed with dinosaurs, and is glued to his trendy engraved iPad.A glance at Liam alone in his room, fixated on the screen, puts him right in line with all of his classmates at Southampton Elementary School.
But the motion detector and heart monitor underneath Liam’s mattress, and the rail guard to keep him from falling, and the small camera above his bed, and the extra heart monitor to be attached to his toe that sits on his end table—all are signs of the little things that set Liam apart.
Little things like Dravet Syndrome, a rare random genetic mutation that Liam was diagnosed with at age 5.
Little things like the seizure Liam averages every other week due to his syndrome.
And, of course, the fact that Liam’s parents are imploring the state to allow their son to use marijuana.
Liam had his first seizure when he was 7 months old and throughout his life has experienced every type of seizure under the sun—the typical tonic-clonic seizure characterized by shaking and stiffness; myoclonic seizures, which are simple jerks of a muscle group; absence seizures, where he looks like he is not entirely conscious; and atonic, which causes him to lose muscle strength.
Liam has even experienced a laughing seizure, which plays out just as it sounds. “I knew that he was in this incredible pain but he just wouldn’t stop laughing,” said his mother Rebecca Reed-Kelleher. “It was really kind of scary.”
The seizures sometimes last only a minute, but some have lasted as long as two and a half hours, requiring hospitalization and intubation to put an end to the symptoms. The lengthier ones, said Ms. Reed-Kelleher, have caused brain damage.
When the seizures began, Ms. Reed-Kelleher and her husband, Denis Kelleher, thought their son would grow out of it all. They dutifully would track every seizure their son had—date, time, symptoms, length—in a “seizure book,” hoping to recognize a long-term pattern.
Then, after years of frustration over the diagnosis of general intractable epilepsy, she “went back to the basics one day,” and read the first book she was given on epilepsy. She then read the newest edition of the book, written by Dr. Orrin Devinsky, and a new chapter on Dravet’s caught her eye.
All the pieces to the Dravet’s puzzle seemed to fit for Liam, and soon after, the family got an official diagnosis. The couple was hopeful a resolution would come with the diagnosis—but, five years and thousands of pills later, they still have to keep the decade-old seizure book.
To treat the seizures, Liam is given a cocktail of about a dozen prescription drugs, costing $1,300 a month. Because of the special nature of his syndrome, which is caused by a mutation in the brain’s sodium channel, most seizure medications, which are sodium channel blockers, are counterproductive for Liam.
The drugs Liam is given don’t necessarily work all the time, according to his parents and as evidenced by the four seizures Liam had in January. Even worse, according to Ms. Reed-Kelleher, is the long list of side effects that only multiply with each additional drug.
“Hair loss, bone density loss, double-vision, night terrors …” Ms. Reed-Kelleher began, rattling off the side effects that she fears she is exposing her son to. “These are decisions I was given as a first-time mother, never told there was another avenue.”
“You’re living with [the side effects] and the other hardships that come with it all, and all the doctors can say is, ‘Yes, but the seizures are controlled,’” lamented Mr. Kelleher. “This is your child, and the effects are permanent. After 10 or 12 medication jambalayas, you know no medications are going to change anything dramatically. Pretty soon, you know the doctors are guessing, too. Yes, we’re at a decent place right now with his meds, but the thought is it can still be better with marijuana, with way less side effects.”
To Ms. Reed-Kelleher, the only other avenue left to explore is medical marijuana—a pill-form treatment, high in medically useful Cannabidiol (CBD) and low in the psychoactive ingredient Tetrahydrocannabinol (THC), that she says has worked with success in other Dravet’s patients.
Mr. Kelleher said that although medical marijuana wouldn’t have been the first treatment they chose, “we would have tried it early on for sure. And knowing what we know now, of course we would’ve tried it earlier.”
“We’re tired of juggling,” Ms. Reed-Kelleher said. “There are no real side effects with the weed, and we’ll know very, very quickly if it works for him. If it doesn’t work, we stop.” Mr. Kelleher then noted that stopping something would be a relief, since with other drugs, even when they knew it was causing their son an unwanted side effect, Liam would have to keep taking it at lower doses for about eight weeks to taper off it.
“The type of marijuana medication we want doesn’t get the child high,” Mr. Kelleher said, before his wife jumped back in.
“The type we want would have no street value,” she said. “The only listed side effects are a calming sensation and focus. He could use that! Let’s compare that to the list of side effects of his current medicine … and on top of the side effects, those drugs make him more high, get him more stoned, than what medical marijuana would ever do. We’re at the end of the rope—what do we have to lose?”
“And I love when people react to medical marijuana by saying, ‘you’re experimenting with your child,’” Ms. Reed-Kelleher continued. “Oh please. Every single thing we’ve given Liam has been an experiment, a trial and error, a math equation of a little more of this, little less of that. It has been one long experiment in barbiturates and psychoactive schizophrenia drugs for his seizures. People want to call marijuana a gateway drug, but people in our support groups, we call it an exit drug, because it’ll help us get off everything else.”
Coincidentally, the author of the book Ms. Reed-Kelleher had read, Dr. Devinsky, director of the New York University and Saint Barnabas Epilepsy Centers and professor of neurology, neurosurgery and psychiatry at the NYU School of Medicine, is currently conducting a CBD study for Dravet patients. When contacted for background on the medical legitimacy of the strategy Liam’s parents have laid out, Dr. Devinsky cautioned patience, but was optimistic.
“Neither the safety nor the effectiveness of [CBD] oil is established,” he said via email. “The placebo response is big and is bigger in pediatric than adult studies. Having said that, I am sympathetic to these families, many of whom I care for and believe that in states that have legal marijuana products, use of products like [CBD] oil under a neurologist’s supervision is reasonable.”
The family have become full-on activists for the passage of the Compassionate Care Act in the New York State Legislature.
The couple is critical of Governor Andrew Cuomo’s plan to put medical marijuana in 10 state hospitals this year, saying he implemented a law circa 1980 that some say would put marijuana seized by police in the hands of patients. “I’m not giving that to my kid,” Ms. Reed-Kelleher said. “The stuff I want to give to him is third-party tested. I want medical marijuana, not bags of old weed off the street.”
She also was critical of the lack of supply such a program might have, noting that for the purposes of their desired treatment, Liam would need to keep a proper dose of CBD in his system at all times, not the occasional dose to deal with pain like cancer patients might need.
When trying to ascertain if the two parents are marijuana advocates in general who just so happen to have a son who could benefit from the drug, Ms. Reed-Kelleher flat out said: “I’m not a smoker, and I’m not a fan of smoking. But I don’t preach to people who drink. The truth is, we don’t care either way about legalization.”
And they realize that the legalization push of late has skewed the lens people view medical marijuana through, seeing it more as a stepping stone to legalization than a credible argument on its own merit.
“Listen, what is holding this up is the stigma,” Mr. Kelleher said. “People just can’t get the picture of sitting around getting stoned out of their mind when they hear marijuana, and we want the farthest thing from that. I don’t care either way about stoners—it is irrelevant to the medical marijuana argument. It’s medicine.”
Regardless of the fate of the Compassionate Care Act, the family will continue the push for medical marijuana approval in New York State—after they are done going on Liam’s surprise “Make A Wish” trip next month.
And the story may come full circle for the family, from vocal activists to active trailblazers, as Dr. Devinsky has extended an offer to enroll Liam in a CBD study designed specifically for Dravet’s patients.
The study wouldn’t guarantee Liam treatment with marijuana per se, as half of the subjects would be given placebo pills as a control, but it could help the very struggle that prompted the couple to speak out.