Pubdate: Sat, 01 Mar 2014
Source: Star-Ledger (Newark, NJ)
Copyright: 2014 Newark Morning Ledger Co
Author: Susan K. Livio
Bookmark: (Cannabis - Medicinal)


NEWARK - The Scotch Plains family who waged a public fight to change 
New Jersey law so they could obtain medical marijuana for their 
severely ill young daughter moved to Colorado on Friday, saying 
that's where they'll find a strain of the drug they hope can save her life.

Brian and Meghan Wilson say their battle in New Jersey, which 
included a public plea to Gov. Chris Christie, led to modest changes 
in the state's strict law, but isn't enough to help their 2 1/2-year 
old daughter, Vivian, who has a potentially fatal form of epilepsy.

"I'm not angry," said Meghan Wilson, clutching boarding passes and 
pushing a portable oxygen tank at Newark Liberty International 
Airport. "I'm just ready to start the next chapter. If we get 
medicine that helps Vivi, that's great. Who the hell cares we had to move?"

Bleary-eyed after a bad night's sleep, Wilson said she and her 
daughters Vivian and Adele, 4, were eager to reunite with Brian 
Wilson, who left for Denver by car last Saturday.

Brian Wilson has already bought Vivian's medicine: a two-month supply 
of a liquified marijuana strain of concentrated Cannabidiol, 
developed by the Stanley Brothers of Colorado Springs in 2012. Their 
dispensary says it serves about 180 pediatric epilepsy patients, 
including many who became "medical refugees" after relocating from 
other states.

When the Wilsons first went public with their story in The 
Star-Ledger in May, they were adamant about wanting to remain in New 
Jersey - close to family, friends, and Vivian's nationally renowned 
neurologist, Orrin Devinsky, an expert in treating her illness, 
Dravet syndrome.

Lawmakers responded by introducing a bill to remove many of the 
barriers that prevented Vivian and other children from participating: 
a requirement to get recommendations from at least two doctors 
including a psychiatrist, limiting dispensaries to grow only three 
strains, and banning them from producing edible forms of medical pot.

After Brian Wilson pleaded with Christie during a campaign stop to 
"please don't let my daughter die," the governor signed a compromise 
bill in August that allowed multiple strains of cannabis to be grown 
and made into edible form, but for children only.

However, none of the three sanctioned dispensaries in the state are 
producing edible products, nor have they acquired the strain shown 
for kids in Colorado to have curbed seizures and allowed them to cut 
back on powerful narcotics with serious side effects.

And the state Health Department has said its lab is not prepared to 
test any form of edible marijuana to determine potency.

The Wilsons say they accelerated their plans to leave New Jersey 
after the sudden death in December of Sabina Joana, a 15-month-old 
girl with Dravet syndrome. Brian Wilson said the changes in New 
Jersey can put the program on the right track. He just couldn't 
afford to wait it out.

"Even though the program is still screwed up, what's in place will 
allow dispensaries to make what we need," he said before his road 
trip last weekend. "We want to make the best of Colorado, but 
hopefully we will be able to come back. New Jersey is our home."

The Wilsons leave behind a growing movement of parents whose children 
have Dravet and other neurological disorders determined to change the 
program again so it works for patients of all ages.

Jennie Stormes of Hope Township, whose 14-year-old son, Jackson, has 
Dravet and is a medical marijuana card holder, said at a Statehouse 
press conference Thursday that New Jersey should recognize other 
states' medical marijuana laws so they can obtain forms of the drug 
produced outside the state. "We really need to ask important 
questions, like why did Gov. Christie allow edible but only for 
minors," she said. "Does my son become less important when he turns 18?"

Assemblywoman Linda Stender (D-Union), who sponsored the first bill 
inspired by the Wilsons, urged Christie to support her "reciprocity" 
bill so "we do not make any more medical refugees, like the Wilsons."

Christie has said "he is done expanding the medical marijuana law." 
His office did not return requests for comment, and the state health 
department declined comment.

At the airport, Gene Gatens, Meghan Wilson's father and "G-Pa" to his 
grandchildren, said he felt "relieved" the family was moving.

"I am very proud of my daughter and son-in-law for staying here and 
seeing through the culmination of that bill," he said. "Wherever they 
go, I'm behind them."

But when Gatens took a call from his sister, who was crying, he lost 
his composure and started to weep.

"Every time I think I have made peace with this, I get these feelings 
of rage and confusion, trying to figure out the absurdity of it all," 
he said. "Why does this have to take them away from their family?"
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MAP posted-by: Jay Bergstrom