Jennie Stormes is moving to Colorado.
She doesn’t yet have a job. Someone is offering her a place to stay while she gets settled.
And she’s leaving behind the support system of friends, educational specialists and doctors necessary to address her son’s severe form of epilepsy. But the Hope Township resident feels the state’s restrictive medical marijuana program has backed her into a corner, leaving her no choice but to seek the treatment her son needs across the country.
“The governor is forcing another kid out of the state,” Stormes said.
Stormes has been at the forefront of efforts to expand New Jersey’s medical marijuana program to minors, appearing at the Statehouse in September 2013 when the Assembly approved the measure. Now, she attends weekly rallies in Trenton protesting the hurdles those seeking treatment must clear.
Treating Dravet syndrome
Fifteen-year-old Jackson Stormes suffers from Dravet syndrome, a severe form of epilepsy. Before medical marijuana, Jackson took four non-narcotic and three narcotic anti-seizure medications.
He’s since downgraded to two low-dosage non-narcotic epilepsy medications and medical marijuana administered as an oil or tincture, according to his mother. Jackson has gone about two weeks without an unprovoked seizure.
“In November 2012, he started using cannabinoids and this is the best seizure control he’s ever had,” she said.
Supply isn’t necessarily the issue; it’s more a problem with getting access to the drug in the proper form to treat seizures, Stormes said. While the state amended the law to expand the program, it still hasn’t approved what form in which edibles are available, leaving parents to convert the marijuana into an oil and essentially breaking the law, she said.