SCOTCH PLAINS, NJ - Vivian is a two-year-old Scotch Plains resident who suffers from a catastrophic, drug-resistant form of epilepsy called Dravet Syndrome (DS).

According to Vivian’s mother, Meghan Wilson, “By the age of 13 months Vivian had failed to respond to 5 different pharmaceutical medications in various combinations. For the past year, Vivian has been on a special high fat diet proven successful for epilepsy, yet she still seizes every day, on average 15 times.” Vivian also wears an eye patch and stays shielded from triggers like bright lights, bright colors, stripes and patterns.

Charlotte’s Web is a strain of medical marijuana (MMJ) that contains a high concentration of a non-psychoactive component (CBD) that has proven effective in treating medication-resistant epilepsy.  “In states with progressive MMJ programs like Colorado and California, DS patients like Vivian, when provided with a consistent dose of high concentration CBD MMJ, are able to stop taking their pharmaceutical anti-epileptic drugs completely,” said Wilson.

Sign Up for E-News

There are a few strains of medical marijuana being grown that can be processed into an edible form, like a tincture. It is then administered to the patient orally via syringe, just like a pharmaceutical medication and there is no “high” effect.

Wilson said, “Vivian received her New Jersey MMJ card in February 2013, but to date she has not received any medication due to New Jersey’s restrictive MMJ program. According to the NJ MMJ law, a dispensary may only grow 3 strains of MMJ simultaneously. Due to unprecedented demand for high-THC MMJ to treat conditions like chronic pain and cancer, there is no high- CBD MMJ being grown. And even if high CBD plants do take root in NJ, Vivian still won’t be able to receive the medication because the current law prohibits the sale of edibles and the 2 oz. per month purchase limit is not enough plant material for us to make the tincture ourselves.”

Furthermore, all of Vivian’s CBD medicine will have to be tested by an approved laboratory to insure that the tincture has the correct ratio of CBD. “Currently, there is no lab in NJ that performs this service, and it is illegal to transport the product from NJ to a state where there is a qualified lab,” said Wilson.

In response to the Wilson’s plight, State Senator Nick Scutari, a proponent of the New Jersey Compassionate Use Medical Marijuana Act presented new legislation on May 30 to amend the state’s medical marijuana law to accommodate children with serious illnesses. Assemblywoman, Linda Stender, also vowed to bring the measure forward in the Assembly.

There are currently 26 states moving toward liberalizing or decriminalizing marijuana. As recently as July 2011, the DEA still classified medical marijuana as a Schedule 1 drug, meaning it has no accepted medical use, is considered unsafe even under medical supervision, and has a high potential for abuse. The states with medical marijuana laws are forced to overlook the federal government. A 2005 Supreme Court ruling allows federal prohibition to supersede state legalization.

“Realistically, unless federal regulators reclassify medical marijuana, or a more forceful constitutional amendment is enacted, roadblocks will remain in place of getting sufficient treatment to people who need it,” said Wilson.

With so many obstacles to overcome, Vivian’s parents are losing hope that she will be able to get the MMJ she needs, in New Jersey.

The following Realm of Caring video provides insight into the potential treatment benefits of non-psychoactive MMJ from a specific strain called, “Charlotte’s Web.”

Video Credit: Realm of Caring