Pubdate: Wed, 01 Oct 2014
Source: Philadelphia Inquirer, The (PA)
Copyright: 2014 Philadelphia Newspapers Inc
Author: Jan Hefler
Page: B1


Jennie Stormes Said Her Son Has Life-Threatening and Frequent 
Seizures. She's Held Weekly Protests.

A nurse who has staged weekly protests about New Jersey's troubled 
medical marijuana program is joining an exodus of families with ill 
children for Colorado. Courtesy of Jim Miller Jennie Stormes 
organized weekly protests against medical marijuana rules she says 
are too restrictive.

Jennie Stormes of Hope, Warren County, said she planned to move in a 
few weeks because she is "tired of being angry and fighting against 
Gov. Christie" to convince him that her severely sick son cannot get 
the relief that cannabis might provide because of the state's 
numerous restrictions.

"I have been fighting for my son's life, and I can't do it here 
anymore," Stormes said. Her son, Jackson, 15, has a rare type of 
epilepsy that triggers life-threatening and frequent seizures.

Colorado legalized the drug for recreational use on Jan. 1. Since 
then, Colorado officials have reported an influx of marijuana patients.

In February, another New Jersey family that had been active in the 
fight to change the state's marijuana program moved to Colorado. 
Meghan and Brian Wilson of Scotch Plains said they were encouraged by 
reports that cannabis was helping children with epilepsy and were 
hoping their daughter, Vivian, would suffer fewer seizures.

Nearly two years ago, Jackson Stormes and Vivian Wilson were issued 
medical marijuana cards in New Jersey, but had to wait months for a 
dispensary to open. When they finally were able to obtain cannabis, 
they could not get an edible form, which children can consume more 
easily than the smokable type allowed under state law.

The parents lobbied legislators to address the problem. Christie 
vetoed their bill, saying he would sign it only if edibles were 
restricted to children and if at least two doctors approved giving 
cannabis to children. He said he was not convinced that edibles were 
necessary for adults and he feared easing regulations could lead to abuse.

The bill was changed and eventually became law. A year later, a 
lengthy approval process for the edibles has prevented dispensaries 
from offering these products, Stormes said.

"I can't wait any longer," she said.

In the meantime, Stormes has been purchasing cannabis buds for 
Jackson and converting them into a tincture, based on Internet 
research. But she says this is not ideal. The tincture cannot be 
tested and the dosage cannot be monitored, she said.

Still, Stormes said her son's seizures have dropped from an average 
of 10 a day to about three a day. But there are good days and bad 
days, she said, and still some hospitalizations.

"It's convoluted because we've been weaning him off drugs," she said, 
adding that he now takes two antiseizure medications and cannabis. 
Previously, she said, he was prescribed a dozen addictive drugs.

In April, Stormes attended a town-hall meeting and asked Christie why 
he would not agree to other changes in the program. He told her that 
he would set up a meeting for her with his aides to discuss concerns.

A governor's spokesman confirmed that the meeting took place last 
month but offered no details. Months earlier, he had said that "the 
governor has signaled his willingness to make changes to the program 
if there is a demonstrable need."

Stormes said she never heard back from the governor's office.

She is moving Oct. 19. The next two protests, held Thursdays, will be 
her last in New Jersey. About 30 marijuana patients, parents of 
children who use cannabis, and supporters have attended the protests, 
displaying placards and handing out pamphlets to passers-bys.

Jim Miller, a supporter with the Coalition for Medical Marijuana New 
Jersey, said he would continue the tradition of weekly protests after 
she moves, at least until Thanksgiving.

"We will miss her. She was like the Energizer Bunny," he said.

Miller said he believes the protests have been meaningful. "It's the 
only leverage we have," he said. "And showing up week after week is 
getting us some attention and support. It's opening some doors."
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