After a long fight to loosen the state's medical marijuana laws, the Wilson family of Scotch Plains say change is not happening quickly enough to treat their two-year-old daughter Vivian. The family has officially decided to move to Denver, Colorado, where they can more easily obtain the strains of marijuana that have proven effective in treating Dravet syndrome, a rare form of epilepsy that causes Vivian to suffer frequent and violent seizures.
The Wilsons have been at the center of a fight that came to a head in August, when Gov. Christie visited Scotch Plains on a campaign stop and Brian Wilson confronted him, urging "Please don't let my daughter die."
The following week, Christie gave conditional approval to a law that eliminates a three-strain limit on dispensaries and allows edible marijuana products for children.
Though the Wilsons were able to purchase medical marijuana from the Compassionate Care Foundation clinic in Egg Harbor Township recently, which they reduced to an oil so Vivian could ingest it, they were unable to get the oil tested to determine its strength and how to dose it to Vivian. Also, the strain was not high in CBD (cannabidols) - the non-psychoactive compound in the plant that has proven effective in treating Dravet syndrome, according to the Wilsons.
"They were calling it their CBD strain, but the label showed it had more THC than CBD and both levels were really low. Real CBD strains are hard to come by," Meghan Wilson told Patch on Saturday. "Aside from one dose, we never used the product from CCF. We didn’t feel comfortable, and our gut was telling us not to give it to her."
The Wilsons had then hoped a new bill introduced by Assemblywoman and former Fanwood Mayor Linda Stender might be the fix for a shortage of CBD strains here: It would allow for reciprocity of marijuana laws so that patients in New Jersey could order their treatments from out-of-state.
Christie shot down the bill at a press conference earlier this month, saying, "I am done expanding the medical marijuana program under any circumstances. ... And the program works fine for people who are truly ill."
"I think a big turning point for us moving was the reciprocity bill," Wilson told Patch. "And then the same day Gov. Christie said 'I’m done moving this forward,' a 15-month-old baby with Dravet died – Sabina Joana, whose parents had just gone through the whole process to get her card. We realized nothing is going to get better for as long as Christie is in office. This is Vivian’s life. We can’t wait anymore."
The Joana family, from Hopatcong, has also taken up the fight, vowing to turn their grief into action and confront the Governor.
The Wilsons did get a bit of good news, though, since deciding to move. Magical Butter, a company that makes machines to turn marijuana into butters and oils, has donated $10,000 toward their moving expenses. Check out Magical Butter's YouTube video of the family receiving the news on Christmas.
"We were shocked and thrilled," said Wilson. "It is such a generous donation that will help tremendously. The cost of moving is huge."
The Wilsons say though moving has become a necessity, it pains them to leave behind their families in New Jersey.
"It’s heartbreaking," said Meghan Wilson. "At this point, it's a matter of let's put our emotions aside and make this happen. We're hoping we will only be out there for a couple years. In two years, the climate federally could be different, there could be special access laws for patients where they would be able to travel across state lines. And there are worse places to move. We're glad Charlotte's Web [a high-CBD strain named for a girl with Dravet] is in Denver."
Still, the Wilsons worry about all the New Jersey patients who can't move.
"What would Christie do if this was his child?," Meghan Wilson says. "He has no respect for this program, no respect for the fact that the plant has healing qualities. He's doing everyone in the state a disservice and it's a shame. Things are changing, views on marijuana are changing. One day he’ll get it, or one day he or someone he loves will be stricken with an illness marijuana can treat. Maybe then he will feel some remorse for the way he’s treated our family."