Last week, Stormes was invited to go to the governor's office in the statehouse to air her concerns, including the lack of edible marijuana that she says her son needs. There to greet her were Jeanne Ashmore, the director of community and constituent relations; Robert Schwaneberg, the governor's policy adviser for health care; and also Arturo Brito, a deputy health commissioner.
"I came away from the meeting very emotional. I bared my soul as to what's going on with Jacks," Stormes said after the Aug. 7 meeting, adding that the numerous prescribed drugs and the brain surgery he had have failed to help him. Now cannabis is her only hope, she said.
Stormes said the aides took lots of notes and seemed sympathetic. But they said they were there only to listen. If they don't come back with answers, she said, the protests will continue.
Stormes was back in Trenton on Thursday, setting up cones and holding up signs while standing at the entrance to the statehouse. About 20 supporters also showed up.
Kevin Roberts, a spokesman for the governor, confirmed that the meeting with Stormes was held, but he did not respond to questions about what whether it might result in changes. He also said the governor's aides have had "numerous meetings" with other parents and advocates to listen to concerns related to this issue. He would not provide specifics.
Stormes said the meeting was held four months after Christie had promised her at a Sayreville town-hall meeting that he would have his staff contact her after she questioned him. He has said at previous town-hall meetings that he does not plan to change the program because that could pave the way for legalization of recreational marijuana - which he adamantly opposes.
A year ago, Stormes and several other parents with sick children had begged Christie to sign a bill to allow an edible form of marijuana, which they said was more appropriate than having their children smoke. After some hesitation, he agreed, but then vetoed a provision that would grant adults access to edibles too.
Jackson, who is nonverbal, will soon turn 18, she said. At Sayreville, she told Christie the age restriction should be lifted.
He responded: "If there becomes a large adult population that needs this type of edible [marijuana], I'll consider it."
Currently, even children cannot get edibles because the dispensaries have been waiting for months for approvals. Stormes and other parents make oils out of the cannabis buds to give to their children.
Ken Wolski and Jim Miller, with the Coalition for Medical Marijuana New Jersey, accompanied Stormes to the meeting with the Christie aides. Despite years of advocacy for patients, they said they had never been given access to the governor's staff. When the coalition requested a meeting with Health Department staff in 2010 as the regulations were being created, they said they were turned down.
Roseanne Scotti, director of the Drug Policy Alliance in New Jersey, another advocacy group, said her group also had never met with Christie's staff to discuss problems with the program. "The governor's made it pretty clear there's limited room for expansion," she said, adding that she had met with Health Department officials but that no new improvements had come out of these talks.
Meanwhile, she said, most advocates had "coalesced around the protests" launched by Stormes.
"We think Jennie Stormes is wonderful and doing everything she can to help her child," Scotti said. "But why should she have to stand out there, week after week? It's a shame."
Miller, a longtime activist, said that he was encouraged by the tone of the meeting with the aides. The staff "seemed like they understood the problems Stormes was describing" and did not contradict her. Another issue they brought up, he said, is Christie won't allow patients to use their marijuana cards to purchase cannabis in states that already have edibles. And, children must obtain the approval of a psychiatrist before they can obtain cannabis even if they are nonverbal, he said.
Miller sees a glimmer of hope that Christie may soften his stance on edibles for adults. "Most medical evidence shows smoking is not good" and Christie has said he would agree to a change if presented with credible medical evidence, Miller said.
Wolski is not as optimistic.
"The officials from the Christie administration did seem willing to entertain marijuana-infused edibles for adults . . . as long as they do not include brownies or baked goods," said Wolski, a registered nurse and the executive director of the coalition. "But the problems [in the program] are so monumental, and this is one small issue."
Then he recalled the events of last summer when the parents of severely ill children had pleaded with Christie to sign the edibles bill and had captured national attention. "But look what happened," Wolski said. "There are still no edibles."