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Philip and Paula Joana pose at a friend's house in Succasunna with pictures of their 15-month-old daughter, Sabina, who died Dec. 2 following a 24-hour seizure. Sabina suffered from Dravet syndrome and her parents her applied to the state's medicinal marijuana program on her behalf.

(John Munson/The Star-Ledger)

Gov. Chris Christie says he already knows exactly what he will to do to change New Jersey’s medical marijuana law.

Nothing.

"I am done expanding the medical marijuana program under any circumstances," Christie said at a Dec. 2 news conference.

The governor made his declaration after he was asked about a new bill that would allow New Jersey medical marijuana patients to buy pot products from dispensaries in other states so sick children would benefit from edible marijuana — which is not yet available in the Garden State.

"Not on my watch," he said.

That same day, Philip and Paula Joana said goodbye to their 15-month-old daughter, Sabina Rose, as she was taken off life support at Saint Barnabas Medical Center in Livingston.

Their baby’s battle with Dravet syndrome, a severe form of epilepsy, was over. Gone, too, was the family’s hope that medical marijuana could have helped.

After seeing videos and interviews with families in Colorado who credited a strain of medical marijuana with preventing life-threatening seizures in their children, the Joanas were desperate to try it.

Philip Joana said he was looking for jobs in Colorado, where the strain they needed could be bought.

But Sabina died before they could move there.

She died before her home state of New Jersey’s medical marijuana program was ready to help children in crisis — four years after the law was enacted.

"Why should we have to leave New Jersey? This is where we live," Paula Joana said. "Sabina was a Jersey girl."

The Joanas, who live in Hopatcong, say are they are determined to change the governor’s mind about expanding New Jersey’s medical marijuana law. Their first big goal: talking to Christie, parent to parent.

Philip Joana, a 30-year-old operating room technician, took issue with Christie’s assertion that those pushing to expand the medical marijuana law want to put the state on a track to legalizing pot for everyone.

"He thinks ‘give an inch and we’ll take a mile.’ All we want is one more inch to provide compassionate care for someone who needs it," he said.

Paula Joana, a 35-year-old bookkeeper, said Christie’s comments made her "furious."

"I liked Christie. I voted for him," she said as she gazed at recent photos of Sabina, dimpled and grinning in a Santa hat. "This is the only thing I disagree with him on. … I don’t understand why he won’t budge."

The Joanas want to change the law and allow New Jersey families to buy marijuana-infused edible products from other states because, they say, by the time parents realize this might help their child, they can’t get them fast enough.

"I know families who need it right now," Paula Joana said.

ANOTHER FAMILY'S FIGHT

Last summer, the Joanas introduced themselves to Meghan and Brian Wilson of Scotch Plains, who were already waging a public campaign to improve children’s access to the medical marijuana on behalf of their 2½-year-old daughter, Vivian, also diagnosed with Dravet (pronounced dra-vay) syndrome.

In August, Brian Wilson walked up to the governor during a campaign event at a diner in Scotch Plains and pleaded with him to sign a bill that would loosen the rules to make medical marijuana more accessible to children. "Don't let my daughter die," he said to Christie.

After Wilson’s plea, Christie did sign a bill that lifted limits his administration had imposed on the state’s medical marijuana dispensaries so they could sell edible products for children.

But the changes have had no real effect yet because no edible products are available from New Jersey’s three medical marijuana dispensaries.

After the law was signed, the Wilsons were among the first to purchase marijuana at the opening of Compassionate Care Foundation of Egg Harbor Township on Oct. 29. They learned how to cook the drug down into an oil, but want it tested before they give it to Vivian. Brian Wilson said he was told the state is not prepared to do that kind of testing yet.

Frustrated, they are planning to move to Colorado.

"Unless a few things change, we are eyeing (a relocation) the first quarter of 2014," Brian Wilson said. "We are preparing as if it is on."

Sabina’s death, he said, "confirmed we are making the right decision. We hope to keep fighting for New Jersey so we can eventually move back."

Health Department spokeswoman Donna Leusner said the state is still working with medical marijuana dispensaries "on the extraction, infusion and manufacturing process" of edible products.

"Before any testing of edibles can take place, the (dispensaries) have to provide the department with a description of the extraction and manufacturing process they will use," Leusner wrote in an e-mail. "Once (they) detail their process, the department will develop a protocol to test for specific materials."

Rather than expecting families to wait, Assemblywoman Linda Stender (D-Union) introduced a bill that would allow registered patients to buy marijuana products in other states.

This is the bill Christie said he would not sign.

Christie’s spokesman Michael Drewniak defended the state’s progress on implementing the medical marijuana law.

"We have implemented and then expanded a medically based program; we now have three (dispensaries) open and growing a number of strains for patients to choose from," Drewniak said in a statement.

He said more dispensaries "are also in the pipeline further expanding patient access," and the Department of Health is working with them "on the process to produce edibles."

Drewniak would not say whether the governor would meet with the Joanas.

Both in recovery from drug addiction, with several years of sobriety each, the Joanas never gave much thought to marijuana as medicine before their baby suffered her first seizure in February.

The anticonvulsant medicines the doctors prescribed did little to arrest the problem, and the side effects were alarming. Their doctor was in the process of filing Sabina’s application to be a medical marijuana card holder when she died.

SPREADING THE WORD

The day after Sabina’s first seizure. Paula Joana found out she was pregnant with their second child, a son, Rocco, who was born in October.

"He is just like her," she said. "He is saving us."

The Joanas plan to get Rocco tested for Dravet. They’ve started a foundation to help educate people about the disease.

Sabina, they say, was a baby who would sway and screech with delight when music played and instinctively knew to smile when a camera appeared. But when the seizures hit, she would bang her head against the wall, clench her fists and wail. In photographs, Sabina’s forehead is dotted with bruises from her many falls.

"When she would start to feel better, she would smile and laugh," Paula Joana said. "Our girl was so strong. She never lost her spirit. God gave her to us for a reason. Now we have a mission, because no kid with Dravet syndrome should have to endure any of this."

RELATED COVERAGE

• N.J. lawmaker introduces bill allowing medical marijuana patients to buy from other state programs

• Christie, confronted by Scotch Plains dad, says decision on kid medical pot bill due Friday

• Chris Christie says no to bill expanding medical marijuana program

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