NJ marijuana legalization: Medical marijuana sent New Jersey family to Colorado

This story is part of the "High Hopes" series from the USA TODAY NETWORK New Jersey, which sent journalists to Colorado and California to see how legal weed would impact the Garden State

DENVER - Seven-year-old Vivian Wilson answered the door smiling and waving at the two journalists on her doorstep before leading them by hand into her family's play room.

She doesn't say much, but never stops smiling — a big, toothy smile that seems to take up her entire face when she laughs, which is often.

The Wilsons live in Virginia Village, one of the southern-most points of Denver, where busy streets give way to two-lane roads with strip malls and small community parks. The mountains surrounding the "Mile High City" are barely visible on the horizon.

To a passerby, the only thing that separates the Wilsons’ neighborhood from a typical New Jersey suburb — like the one they left in 2014 — is the marijuana dispensary a 20-minute walk away.

Watch a video of Vivian's story below.

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That’s why Vivian's family moved here from Scotch Plains, New Jersey, four years ago. Two months after she was born, Vivian was diagnosed with Dravet Syndrome, a rare form of epilepsy that affects 1 in 20,000. It's a lifelong disease that comes with developmental disabilities and a series of dangerous seizures.

In New Jersey, those convulsive "tonic-clonic" episodes would land Vivian in a hospital near the family’s home on at least a weekly basis. Vivian also had limb-specific focal seizures that left parts of her numb.

And Vivian suffered from photosensitivity, with visual patterns or flashing lights sometimes triggering those convulsive seizures. Vivian had to wear an eye patch to trick her brain into not recognizing the patterns.

Vivian's parents had heard about the benefits of medical marijuana from other Dravet Syndrome families. At the time, Colorado was among only a few states with a relatively open medical marijuana program.

"If you were to ask me years ago, I would've said Vivian is just a lot of work and a lot of stress," said Brian Wilson, Vivian’s father, in an interview with USA TODAY NETWORK New Jersey. "But these days, Vivian is probably one of the most inspirational people I know — always bringing joy and laughter to you."

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Every day during their first two years in Colorado, Wilson gave his daughter two doses of marijuana — using trial and error to figure out the dosing of his home-brewed cannabis oil, which he'd spray in her mouth.

She wouldn't get high from the drug, but the results were dramatic: Vivian was free of the convulsive seizures for four to six weeks at a time. And the seizure-triggering photosensitivity was gone, allowing her parents to relax ever so slightly.

“It’s the reason most of our families move to Colorado,” said Dr. Kelly Knupp, Vivian’s neurologist at the Children’s Hospital Colorado. “Any one of us, as a parent, would go to the moon and back for our kids.”

Vivian is an outlier among the Dravet Syndrome patients, Knupp said. While some families report “amazing responses with cannabis products,” only about one-third of patients in a hospital study saw improvements.

Overall, a small percentage of families continue using cannabis in the long-term, Knupp said.

“In the long run, it wasn’t the overall solution to their epilepsy,” she said.

But for the Wilsons, medical marijuana had transformed Dravet Syndrome from a life-altering disease into a manageable one, her father said.

“She could be in another room. We could hear her playing and not have to worry,” said Wilson, a 44-year-old software sales engineer. “It could always be improved but, compared to where we were, it was really, really great.”

That’s why it was so tough for the Wilsons to give it up.

Moving out

For the price of 1 ounce of medical marijuana in New Jersey, a patient can instead buy a round-trip ticket to Denver, purchase an ounce of recreational marijuana and consume it there.

MORE: Murphy medical marijuana program could double number of patients

Until recently, New Jersey's medical marijuana program was designed almost as a last resort. Only a dozen conditions were admitted — like terminal cancer and multiple sclerosis — and dispensaries were only allowed to offer a limited number of marijuana strains. Patients could only buy 2 ounces per month at just under $500 an ounce, among the highest prices in the nation.

As of April, nearly 89,000 Coloradoans have an active medical marijuana registration while New Jersey just passed the 20,000-patient mark. Colorado has 5.6 million people, compared with New Jersey's 9 million.

In Colorado, patients often pay less than $100 for a doctor's consulting fee. They must also pay a registration fee, which recently increased by 66 percent — from $15 to $25.

In New Jersey, it costs $200 to register and patients must visit two doctors before patients are allowed to register for the medical marijuana program.

Last month, Gov. Phil Murphy announced an expansion of the program that added new conditions, such as anxiety, migraines and Tourette’s syndrome, and increased the monthly allotment to 4 ounces of marijuana — a few hundred joints, by most estimates.

The Wilson family moved to Colorado in 2014 after one "nightmare" medical marijuana purchase in New Jersey: After two doctor visits, a psychiatric consultation, registration fees and the medical marijuana itself, the total cost of the endeavor surpassed $1,000.

In Colorado, Brian Wilson pays $25 to register his daughter as a medical marijuana patient. He can pick up the strains that work best for Vivian — "Blue Dream" in the morning and "Tahoe" at night — on his way home, no appointment necessary.

And the price per ounce is around $250, still cheaper than medical marijuana in the Garden State, where prices have dropped as more medical marijuana dispensaries have opened.

RELATED: Medical marijuana sends families to Colorado for epilepsy relief

Before the Wilsons left New Jersey, the medical marijuana reform bill they championed was decimated by then-Gov. Chris Christie. In particular, Christie line-item vetoed a measure that would have legalized edible marijuana products for the first time.

Instead, edibles would only be issued to underage patients. And with only a few children in the medical marijuana program, Wilson believed that no dispensary would bother spending money on a product that few patients could purchase.

It was an unsatisfying end to what, for the Wilsons, had become a year-long feud with Christie and turned the Vivian had become the poster child for New Jersey medical marijuana reform. Images of Vivian, wearing the eyepatch, and interviews with her parents appeared on national news networks and publications throughout New Jersey.

A 2013 exchange between Wilson and Christie at a gubernatorial campaign stop at a diner went viral when Wilson confronted the governor, pleading with him: "Please don't let my daughter die."

Christie said it was as "complicated" issue. Wilson replied that it was "very simple."

"I know you think it's simple and it's not," Christie responded.

"I got a new best friend," Wilson joked, remembering the exchange nearly five years later.

Their story followed Christie for years, even during his failed presidential bid. At a 2016 stop in New Hampshire, a person in the crowd asked him his thoughts on medical marijuana, specifically citing Vivian Wilson.

"Vivian Wilson's family chose themselves to leave the state of New Jersey. The fact is, we signed into law the ability for children to get medical marijuana under very strict guidelines," Christie said. "This is a medical program, not a recreational program."

The Wilsons were convinced that Vivian would have to suffer for years before New Jersey’s medical marijuana program saw the kinds of changes that would give her any relief.

It was time to move.

Colorado difficulties

Despite finding easier access to medical marijuana, the Wilson's trek to Colorado has been no cakewalk. Within a few months of moving to Denver, Wilson put his "activist" hat back on.

An arising issue was the creation of homemade hash oil, in which the psychoactive THC is extracted from marijuana and combined with a solvent — usually butane or ethanol. The resulting oil is used to create anything from cannabis-infused butter (used to make pot brownies or cookies) to topical creams.

Since 2014, dozens of accidental explosions have occurred in Denver caused by failed extractions. They all involved butane, which is normally used as fuel. The Denver City Council tried to outlaw the practice but included ethanol — alcohol — in the ordinance.

HIGH HOPES: Ins and outs of legal weed regulation in California

RELATED: Hash oil explosions prompt potential changes

This enraged Wilson, who was faced with finding a new way to create Vivian's dosage.

“We moved out here. We thought we were all set and then suddenly a new fight arose,” he said.

He prepared for another knockdown, drag-out fight. He prepared for another “new best friend” in state or local government, telling his family's story to officials at a Denver City Council meeting.

Their reaction left him flabbergasted: We hadn't thought about this issue. It's something we need to consider.

It was one of the chief differences between Colorado and New Jersey, Wilson said. In Colorado, marijuana was commonplace. It was discussed like a matter of public policy — like any other health or business issue.

In New Jersey, a simple discussion of anything related to marijuana came with judgment and tsk-tsks from critics, Wilson said.

“The most refreshing part about discussing it out here is that they talk about it candidly. They actually have open and common-sense conversations about these things,” Wilson said. “It’s funny, the conversations you have with politicians, the fire department, the police. You’re talking about pot … and it’s OK.”

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Those little issues have continued to pop up during the Wilsons' four years in Denver, the kinds of snags he hopes New Jersey regulators will address before they impact anyone else.

Most recently, there's the issue of testing: Since Wilson isn't a licensed marijuana business owner, he doesn't have access to marijuana testing labs. While he said his ability to extract cannabis oil "has improved," he's still an amateur.

Without access to professional, scientific testing labs, there's no way to know the true THC potency of one of his batches of cannabis oil.

“They thought people from the black market were going to be using that to verify their product and be able to make more money," Wilson said. "Who on the black market would actually pay to get numbers instead of just making it up? Nobody can verify it."

Going on, going off

The Wilsons, though, decided that Vivian had to give up medical marijuana — at least for the time being.

It was necessary, they concluded. She was offered a spot in a federal drug trial for fenfluramine, an appetite suppressant that was being tested for its ability to control Dravet Syndrome seizures. Trials in Belgium showed promising results, with patients going anywhere from six months to two years without a tonic-clonic seizure.

But since marijuana is still illegal on the federal level, Vivian had to stop taking medical marijuana if she wanted to be part of the trial. Watch a video below to learn how University of Colorado researchers found an endaround to study legal weed despite it being federally illegal.

“While we clearly loved the effects we were seeing with cannabis, for us it wasn't a fight to give our kid cannabis,” Brian Wilson said. “It's a fight to give our kid a good life and stop her from having seizures, from one day possibly dying from seizures.”

The Wilsons were one of many families who gave up medical marijuana to try their luck with fenfluramine, Dr. Knupp said.

The results from the new drug have been mixed. The tonic-clonic seizures are still occurring every four to six weeks, no change over medical marijuana.

The smaller focal seizures are largely gone, but the photosensitivity “came back with a vengeance.”

“It can be tricky for them to manage, because they basically have to keep her away from those things that stimulate it,” Knupp said.

In a perfect world, Brian Wilson would give his daughter a combination of both medical marijuana and the new, experimental drug. But that can’t happen until the drug is released onto the open market — which could still be years away.

“I shouldn't say that I know but, I have a really strong feeling that, if I could give her a little bit of cannabis with this other drug to control that pattern sensitivity, we might really hit that sweet spot,” Wilson said. “But until this drug comes to market, we either have a choice of pulling her off of this drug or sticking it out.”

For now, the plan is to stick it out — in Colorado, despite a newly expanded medical marijuana program in New Jersey that would likely soon provide Vivian with similar relief. Murphy's plan, as proposed, would legalize edibles and remove the requirement for a psychiatric consultation.

At some point over the last four years, Colorado stopped being simply a temporary safe haven for medical marijuana and started becoming a home.

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The Wilson children made friends with their neighbors and classmates and, last year, their maternal grandmother, Ginger, moved from Brick to the Denver suburbs.

And their parents got used to the mountain lifestyle, where a 20-mile journey takes less than 20 minutes, and the easiest shortcut sometimes runs right through downtown Denver.

Brian Wilson misses the beach. He misses the pizza. “You can’t get a good slice out here to save your life,” he joked.

But the family is rooted in Colorado now — whether New Jersey legalizes marijuana or not. Whether or not the "miracle drug" goes to market, and Vivian's parents can find the sweet spot to give her complete relief.

“It's not like I have ill feelings towards New Jersey, but Colorado and Denver are great places to be,” said Wilson, pronouncing his home state the way a Coloradoan does, emphasizing the short “A” sound, as in "Chad."

“I mean, the weather and taxes, alone. The humidity,” Wilson said. “The hectic insanity of it all is better.”

Mike Davis; @byMikeDavis: 732-643-4223; mdavis@gannettnj.com