Sarah Gonzalez, Reporter, WNYC/NJPR
Sarah Gonzalez is the northern New Jersey enterprise reporter for WNYC and NJPR.
When Sabina Rose Joana was 6 months old she was diagnosed with Dravet Syndrome, a severe form of epilepsy that was causing her to have up to 90 seizures a day.
Her parents heard of other families having positive results with medicinal marijuana. The evidence was anecdotal, but parents said it was reducing the frequency and intensity of seizures.
They were in the process of getting Sabina a medical marijuana card in New Jersey, but faced months of delays. Sabina died in the process, after having a seizure that lasted 24 hours and left her brain dead.
She was 15 months old.
Her mom, Paula Joana, says there are unnecessary hurdles to get a marijuana card. She wants a meeting with Gov. Chris Christie.
“I would show him a video of her dancing and blowing kisses, and I would show him what I don’t have anymore,” Joana said. “I would show him the video of her having a seizure, and I would make him watch that. And that’s all I would need to say. He knows what needs to be done.”
Under pressure from parents, Christie signed a law last September allowing edible forms of marijuana to be sold to minors with life-threatening illnesses who are too young or unable to learn how to smoke.
But the state has still not given the marijuana dispensaries permission to sell edibles. And Sabina’s death has convinced other families to get edible marijuana for their children whatever ways they can.
Implementing the Marijuana Law
Former Gov. Jon Corzine signed a bill allowing the sale of medical marijuana in 2010 — the day before Christie’s inauguration. But Christie has been slow to implement it.
There are currently three dispensaries in New Jersey and 2,211 marijuana card holders, including both adults and minors.
In comparison, Arizona, which passed medical marijuana the same year as New Jersey, has 78 dispensaries and 50,073 card holders, according to the Arizona Department of Health Services.
State legislators introduced another bill that would allow parents to bring edible marijuana from other states until edibles are sold in New Jersey.
At a press conference in December, right after he was re-elected, Christie said he wouldn’t consider it.
“I am done expanding the medical marijuana program. Under any circumstances,” Christie said.
He said the program works fine for people “who truly need it,” and says the legislature is using sick kids as an excuse to legalize recreational use.
“They’re not getting legalization under this governor. They’ll have to elect somebody else, and you know what? They don’t get the chance for that for another four years,” he said.
Paula Joana, Sabina’s mom, says Christie made the comment the very hour her daughter was taken off a ventilator.
“I’m in Livingston completely broken and this bull headed governor has the gall to say that,” she said.
The pressure from parents recently caused the governor to acknowledge there are flaws with the medical marijuana program. He blamed it on the dispensaries, saying the businesses are not offering edibles because there is no profit in it for them.
But Yale Galanter, the attorney for Garden State Dispensary in Woodbridge, N.J., says the company is already selling edibles in Colorado.
“If the state of New Jersey said to us, listen Garden State Dispensary, you’re allowed to sell edibles tomorrow morning, I could do that,” Galanter said.
Parents have complained that dispensaries are turning patients away, and taking too long to fill prescriptions.
Donna Leusner with the New Jersey Department of Health says it’s up to the dispensaries to decide what they sell and who they sell it to.
“The Alternative Treatment Centers are independent, nonprofit businesses regulated by the New Jersey Department of Health. The Department is not involved in their day to day business decisions.”
The health department says it’s working with the dispensaries on the process they will use to make edible products.
Bringing Edibles from Other States
In the meantime, some parents, like Jennie Stormes, are learning how to turn marijuana buds into butter and oils their children can consume.
At her home in Hope, N.J., Stormes takes a mason jar off the shelf in the refrigerator where most people keep their butter.
“It smells like marijuana,” she says as she opens the jar.
“It looks just like a butter, has the consistency of butter, it is butter, it’s just green. It’s been infused with the medicinal marijuana.”
She makes it for her 14-year-old son Jackson. He’s had life threatening seizures since he was 4-months-old.
His mom says he cannot learn to smoke.
He watches Barney and plays with picture books. He doesn’t talk but he does pace around the house shouting, “Good morning, Jax,” every few minutes.
Jax has had parts of his brain removed in an effort to stop the seizures.
He has failed 50 different combinations of psychoactive drugs with severe side effects.
The emergency drugs to stop a seizure could also stop his heart.
“I was at a point where I was very desperate with my son and I had nothing to lose and everything to gain because my son was dying,” Stromes said.
Since Jax went on marijuana a year-and-a-half ago, his seizures have gone from about 10 or 20 every day, to one every couple weeks. They now last a few minutes instead of hours.
Jax is off all pharmaceuticals except for one, and for the first time in his life Stormes says her son is no longer “stoned.”
She buys a bud that is low in THC — the element in marijuana that gives the high.
But she can’t get enough of it. The state only allows her to purchase two ounces every month. That’s about 10 days worth of edible medicine for Jax.
So she has marijuana oil brought in.
“It’s not safe,” Stormes said. “I run the risk of being arrested every day because his medicine comes from California.”
Jax is a dual resident of California and New Jersey and is a medical marijuana card holder in both states.
Stormes says the marijuana from California is better than any marijuana she can get in New Jersey. The THC level is less than 1 percent. It’s impossible to get high.
Raman Sankar, a pediatric neurologist at Mattel Children’s Hospital at UCLA, treats children with the same syndrome as Jax. He says he’s hearing compelling results from families using medicinal marijuana.
He will be one of several investigators in the country to study its effectiveness among epilepsy patients. But he’s reluctant to prescribe marijuana himself until there’s more data on its safety and efficacy.
“This is a little like early 19-20th century medicine,” Sankar said.
“When I was very, very young in my grandfather’s office in rural India they would make up medication. They'd buy raw ingredients and put together concoctions and colorful liquids and, ‘this is your cough mixture,’ they would say,” he said.
Sankar says there’s no consistency in the marijuana products. Every dispensary makes their own. They don’t go through the FDA.
But parents say the FDA-approved drugs aren’t stopping the seizures.
And when Sabina died, it convinced others that bringing marijuana across state lines is worth the risks.
Sabina’s mom wishes she had.
“Getting probation for weed doesn’t scare me. Seizures scare me,” she said.
“Losing my daughter, worst fear I ever had came true," she said. "I’d sit in prison my entire life if she was still here and on cannabis. I would sit in there gladly. But it was too late.”