SCOTCH PLAINS, NJ -- Monday brought a huge victory for local residents Brian and Meghan Wilson: The medical marijuana bill inspired by their 2-year-old daughter Vivian was approved by the State Assembly, the final step before it reaches Gov. Chris Christie's desk.



The Wilsons have made headlines for their fight to get their daughter a strain of marijuana that has shown success for children with Dravet syndrome, a rare form of epilepsy that causes Vivian to suffer frequent and violent seizures.



The family was met with obstacles, including satisfying state requirements that a psychiatrist sign off on Vivian's treatment, but were eventually able to secure a prescription for Vivian in February, making her one of the youngest enrolled in the state's program.



Though Vivian's a card-carrying medical marijuana patient, the Wilsons aren't able to get the specific strain of marijuana they need due to a limitation that dispensaries sell no more than three strains of marijuana.



"The strain we need contains more CBD (short for cannabidiol), which is non-psychoactive, than THC, the other ingredient in marijuana," Meghan Wilson said. "CBD doesn't make you high. The strain is really rare and has to be bred a certain way, but its gaining popularity in states like Colorado and California."



Wilson said because New Jersey dispensaries can only sell three strains, it's unlikely they would chose to carry such a rare and non-psychoactive one. The other hurdle for the Wilsons is the law prohibits edible marijuana products, which is how many child patients receive the marijuana instead of smoking it.



After writing lawmakers for help with their plight, State Assemblywoman Linda Stender (D) and State Sen. Nicholas Scutari (D), sponsored a bill that would rectify all three of the Wilsons' obstacles by requiring only one prescribing physician and allowing the sale of edible products and unlimited strains of marijuana. On Monday, the bill passed the Assembly by a vote of 55-13-8.



"I feel like I just won lottery," Meghan Wilson told Patch Monday night. "I was not expecting 55 'yes' votes. But the reality is I can't exhale until Christie signs it. We really need to target the state health commissioner and Governor Christie now and make sure he fully understands our situation."



When Christie was asked about the Wilsons last month during a press conference in Lavallette, he responded that he was "very concerned, if we go down this slope of allowing minors to use this, where it ends. So I'll have the health commissioner look at it, report back to me. But I don't want to mislead people, either. I'm not inclined to allow them to have it."



After Monday's vote, Assemblywoman Stender brought Meghan Wilson and another New Jersey Dravet mom (and registered nurse), Jennie Stormes, to Christie's office. The governor was unavailable, but sent an assistant to hear their stories.



"We spoke to her for about 10 minutes and she was very receptive," Meghan Wilson said. "We highlighted for her how the changes to the bill would positively benefit our children."



Stender said she took up the Wilsons' fight immediately after receiving their letter asking for help.



"I called her after I read it because it was a heartbreaking story," Stender said. "I'm a mother of three and grandmother of five. We called the marijuana bill the Compassionate Care Act, and compassionate care to me in this instance means figuring out a way to not add extra hurdles for this child to get relief."



Meghan Wilson's excitement Monday night was stymied when she heard from her husband that Vivian had a seizure while she was at the statehouse.



The seizures are brought on by stress, external stimuli or even something as simple as a pattern in a fabric, and Vivian experiences "anywhere from 10 to hundreds" of smaller, myotonic seizures every day.



The Wilsons recently began giving Vivian a high-fat diet and having her wear an eye patch, which helps to lessen their frequency. But every 7 to 10 days, she has a full-body convulsive seizure where she loses consciousness, which can last from 20 minutes to more than an hour.



"They're horrifying," Meghan Wilson said, remembering the first time she saw Vivian seize at 2 months old. "If you saw my daughter seize for 45 minutes, an hour, stop breathing, you'd do anything to help her."



At Vivian's first birthday, she had her first taste of chocolate cake. Twenty minutes later, the excitement brought on a seizure that wouldn't stop. She spent seven days in the ICU.



"When it happens, we yell 'seizure,' and everyone has a job, including my 4-year-old, Adele," Meghan Wilson said. "She goes and gets a yoga mat to cushion her. I'll grab the rescue drugs and my husband gets the oxygen."



Vivian's rescue medication is a benzodiazepine called midazolam, which is shot up her nose with a syringe during the seizure.



The Wilsons' goal is to see Vivian go two months and one day without a seizure, since from birth to two months old is the longest she's ever gone without one.



"After she had her first set of vaccinations, she had her first seizure and I took her to the hospital," Meghan Wilson said. "They told me she probably had a fever and said it would never happen again and it did two months later. She was given phenobarbital at 5 months old. That's the thing—the marijuana we are trying to get her won't make her high, it's these heavy barbiturates and benzos that do and they're legal. The seizures and meds are killing her brain cells and organs."



Coincidentally, Meghan Wilson works as a manager for clinical drug trials.



"I've worked on anti-epilepsy drugs and I'm not bashing pharmaceuticals, but Dravet is medication resistant," she said. "And even in the Dravet support groups, when people say they heard about a new drug, it's a little depressing to me. I know the process all to well to know there is nothing in the pipeline and even if there was, it isn't going to be FDA approved for 15 years."



They've tried six different drugs in various combinations, but none have worked to reduce Vivian's seizures. The Wilsons learned that marijuana was effective for Dravet from a Dravet parents support group on Facebook.



"I thought, 'Wow this is awesome,'" Meghan Wilson said. "Of course, I had smoked pot before in my youth, and I knew that it had a lot of medical benefits and that it wasn't harmful, but I never really gave it much thought for Vivian until then."



Meghan Wilson hopes one day her daughter will only need her diet and the marijuana. But for now, the Wilsons' lives revolve around coping with the seizures, which make even the simplest tasks a challenge.



"We were able to get her outside a little this weekend, but heat and sunlight are triggers," Meghan Wilson said. "So just to take her outside in our backyard we had to use the eye patch, a pair of glasses with a special lens, a cooling vest, cooling towels and a spray bottle to mist her all while keeping her in the shade."



Even if they wanted to put her in her wagon and take her around the block, Meghan Wilson said, they can't go far because they need to have the oxygen and rescue meds nearby.



"We are trying to teach our 4-year-old not use the word 'hate,' and the other day she caught me saying 'I hate seizures,'" Meghan Wilson said. "She said 'Mommy don't say 'hate,' and I said 'Oh no, we can say we hate seizures.' I hate them, I hate what they've done to my family, and I will do whatever it takes to reduce them for Vivian."

