A Victory in Trenton
On December 2, 2013, New Jersey Governor Chris Christie held his first press conference after his re-election. Wearing a blue pinstripe suite, a green tie covered in blue and white elephants, and a lapel pin of an American flag embossed over the outline of the Garden State, he announced a shuffling of several staff positions on his team, discussed the problems he had with a Senate bill that would have allowed undocumented immigrants to pay for college tuition (a modified version of the bill would be passed by the legislature shortly thereafter), and laughed off accusations that he had orchestrated lane closings off the George Washington Bridge in an act of political reprisal against Mark Sokolich, the Democratic mayor of Fort Lee, who had refused to endorse him during his re-election campaign.
"I worked the cones," Christie said sarcastically. "Unbeknownst to everybody, I was actually the guy out there. I was in overalls and hat, but I was actually the guy working the cones out there. You really are not serious with that question?"
Within weeks, "Bridgegate" (as it was nicknamed by the press) would snowball into a full-scale political crisis for the governor, but on December 2, 2013, Christie's trademark gruff confidence was still intact as reporters peppered him with questions, many of which he answered in the tone of a busy man whose time is being wasted by fools. When he was asked about a recent CNN poll that found him to be the leading Republican presidential candidate for the 2016 election, he dismissed his front-runner status as "meaningless."
To the governor's chagrin, the conversation turned to another Senate bill -- one that sought to allow registered New Jersey medical marijuana patients to buy cannabis in another state and bring it home. The bill was inspired by Meghan and Brian Wilson -- Brian being the father who had confronted Christie face to face the previous August, lambasting the governor for not allowing medical marijuana access in New Jersey for children. Wilson's 2-year-old daughter, Vivian, suffers from Dravet syndrome, a drug-resistant form of epilepsy that certain cannabis strains have proven effective in controlling. It would prove to be an embarrassing TV moment for the future candidate, his hemming and hawing on the subject of medical marijuana later spliced with video of Vivian's seizures.
In response to his confrontation with Brian Wilson and the bad press that followed, Christie had signed an expansion of New Jersey's medical marijuana bill that would allow children to be treated with cannabis, but inserted into it the need for additional doctors to sign off on the decision, including a psychiatrist -- an unnecessary roadblock when you're talking about a two-year-old like Vivian Wilson.
In Christie's mind, the medical marijuana movement had already strong-armed him once, and he was clearly displeased that the subject was being brought up again during this first press conference after his landslide re-election victory.
"See, this is what happens," he fumed. "Every time you sign one expansion, then the advocates will come back and ask for another one. Here's what the advocates want: They want legalization of marijuana in New Jersey. It will not happen on my watch, ever. I am done expanding the medical marijuana program under any circumstances."
A Loss in Livingston
On that same day, 46 miles away from the governor's press conference in Trenton, Paula Joana was in a hospital in Livingston, NJ, singing "Somewhere Over the Rainbow" to her 15-month-old daughter Sabina Rose, in an attempt to elicit some sort of reaction that might prove to the doctors that her firstborn child was not, as feared, brain dead.
"Monday, December 2, 2013, was the worst day of my life," Paula recalls. "I slept at my best friend Kelly's house, and when I woke up, I called my husband Phil. I heard the urgency in his voice, and Kelly and I sped to the hospital. Her husband, Rob, took my infant son Rocco to my parents' house for me. The doctors performed tests to see if Sabina was brain dead. I was hoping they would see a sign. They never did."
Paula and Phil had made every effort to comply with New Jersey's existing medical marijuana laws, but there were so many doctors to see, so many applications to file, that the process took months -- and Sabina didn't have months. She died waiting for the cannabis tincture that could have alleviated her suffering.
Dravet syndrome, which Sabina Rose had been diagnosed with, is notoriously resistant to traditional medications, but cannabis oil has been shown to radically reduce the frequency of the epileptic seizures that it causes in children. In fact, it was only after CNN host Dr. Sanjay Gupta witnessed cannabis's effects on young Charlotte Figi, another Dravet sufferer being treated with cannabis oil, that he apologized for publicly denying the legitimacy of medical marijuana. Claiming he had not done the proper research, and that he had been duped by years of government propaganda, Gupta is now one of medical marijuana's most vocal supporters. There is now a strain that target's Dravet Syndrome, named after the girl who inspired Dr. Gupta's epiphany named, "Charlotte's Web."
Overcome with grief, the questions mounted in Paula's mind: "How did this happen? Was it my fault? We should have moved, we should have tried harder .... "
The doctors let Paula and Phil hold Sabina. Rob and Kelly, Sabina's godparents, were there for every excruciating moment. Family members started showing up. Sabina's grandparents said their good-byes. Paula spoke to her daughter.
"I told my precious baby that if she had to go to heaven, to go, that Mommy would be okay. Her daddy held her the whole time. December 2, 2013, at 2:06 p.m., my daughter went to heaven. At 2:07 p.m., I realized how unfair this was, and someone was going to answer my questions."
A Perfect Child
The best day of Paula and Phil Joana's life was August 21, 2012, the day Sabina Rose was born. There were no signs of the troubles ahead; in fact, to Paula and Phil, Sabina was a "perfect child" who ate well, slept well and was always smiling. The holidays were a joy, and on New Year's Day, Sabina sat in her high chair for the first time, an activity she seemed to love. Paula returned to her job as a bookkeeper and, as she describes it, "life took on a new normal."
On February 6, 2013, Sabina had her first seizure. Paula's parents, who had been watching the child, called her, and she rushed home from work and took Sabina to the emergency room. A CT scan and EEG showed nothing amiss with the child. The doctors told Paula and Phil to keep an eye on Sabina, but that it was probably a one-time thing. The following day, February 7, Paula found out that she was pregnant with her second child. While not a particularly religious person, Paula looks back at the timing as a sign from a higher power.
"When we brought Rocco home, Sabina was so sweet to him," Paula remembers. "When he cried, she would share her binky with him and pat him on his head. I know now that I had Rocco to save us. That is exactly what he is doing. When he is asleep, he looks just like her. Rocco saves us on a daily basis. His sister lives within him."
The joy of Rocco's birth was tempered by the fact that Sabina's seizure would not turn out to be, as they had all hoped, an isolated incident. After the first one, Sabina's seizures started increasing in frequency and intensity. On February 15, the doctors prescribed phenobarbital. On March 10, she was baptized. The following day, Sabina had her most violent seizure yet, and the doctors prescribed Topamax. After another seizure, the phenobarbital was replaced by Keppra. The seizures continued and Sabina was given Onfi, a benzodiazepine in the same family as Xanax.
Despite the cycle of seizures, emergency-room visits and new prescriptions, followed by yet more seizures, the Joanas attempted to live a normal life.
"Sabina loved to dance," Paula recalls. "Any kind of music could come on and she would start dancing immediately. She said a few words, 'Momma' being her first. I miss hearing her say that. We took her to the beach last summer and she feasted on seafood. I remember her pediatrician telling us that we were very daring, because usually you don't feed kids that until they are 2. Looking back, I'm so glad she had that meal. Her favorite food was fresh peaches. We never, ever crossed her meds with peaches -- we wanted her to enjoy them."
The side effects of the prescribed medications were unbearable for a mother to watch: screaming, anxiety, crying, constipation. Sun glare irritated Sabina. She began banging her head on the wall and was ultimately fitted with a helmet. She grew terrified of the high chair that she once enjoyed, because she realized that that was where she would be administered her medications.
Shortly after Sabina's first birthday, she was finally diagnosed with Dravet syndrome, the same drug-resistant form of epilepsy that had afflicted Vivian, Brian and Meghan Wilson's daughter.
On August 14, Paula and Phil were watching News 12, and the footage of Brian Wilson repeatedly shouting "Please don't let my daughter die, governor!" as he confronted Chris Christie about New Jersey's medical marijuana program resonated profoundly with them.
"Phil and I both knew we had to find the Wilsons," Paula recalls. "I joined the support pages for Dravet and medical marijuana, and I saw Meghan and Brian posting there. I messaged Meghan. We met them formally when Sabina was in the ICU. Brian and Meghan gave us step-by-step instructions on what to do about getting Sabina a medical marijuana card. They are like family, and we have told them time and time again that Vivian is our baby too, and we will fight hard for her."
But the Joanas soon found that, even with the governor's grudging expansion of the law, it took three months to line up the requisite doctors just to submit an application.
Growing increasingly frantic, Paula and Phil began enlisting everyone they knew to try and find any source, illicit or not, for the high-CBD oil that was their greatest hope. Marijuana contains many cannabinoids, and while THC is recognized as the one that is mostly responsible for getting people high, CBD is another that lacks psychoactive properties but has numerous medical applications. In states with strong medical marijuana programs, it is easy for a patient to get a high-CBD, low-THC oil to treat their ailments with little psychoactive effect.
"I knew CBD would work," Paula says. "We didn't need a doctor to tell us that. I saw how it was working for other kids with the same exact thing Sabina had. Phil and I were never afraid of getting arrested or getting this illegally -- don't ever think we didn't try. It was too late. Getting arrested and probably getting probation didn't scare me. Seizures scared me. ICU scared me. I think it's obscene that, if we did get caught, we would be treated like drug traffickers. Drug trafficking is alive and well. Drug dealers are not concerned with a high-CBD oil. You won't get high from it."
In Sabina's case, the months that the Joanas spent trying to meet the requirements of New Jersey's medical marijuana law proved to be an eternity.
"Chris Christie and his medical marijuana program failed Sabina," Paula says. "He failed Sabina. I love New Jersey -- I even voted for this governor twice. I liked him. I don't understand -- if I could talk with him, I would ask why he has no opinion about me pumping my daughter full of a benzodiazepine, but he has such a negative opinion about medical marijuana. He has kids, and I know that any parent would do what it takes to save them. I would show him a video of my precious girl and hope that somewhere in his heart, he would see what I lost."
Over the Rainbow
Hundreds came to the Davis and Hepplewhite Funeral Home in Succasunna, NJ, to honor Sabina Rose. She was laid out in her Christmas dress, and Paula tucked her Christmas jammies beside Sabina in the coffin. At the end of the service, Paula held Rocco in her arms and led the crowd in a rendition of "Somewhere Over the Rainbow," at one point cracking a joke through her tears at how bad everybody was singing.
While New Jersey is certainly not the fabled Land of Oz, its governor, Chris Christie, does have the Oz-like power to expand his state's medical marijuana program to allow parents like Paula and Phil to receive cannabis tinctures that address Dravet syndrome from states with more developed and less regulated medical marijuana programs. The bill is there; all he has to do is sign it. Until such time as the governor exercises that power, he will be the subject of two grieving parents' relentless pursuit.
"He has ignored my many attempts to meet with him," Paula says. "Everyone [in his office] who answers my calls knows who I am, and they blow me off. My emails are not answered. He can ignore me and my husband -- but we aren't going away, and he doesn't scare us like he scares everyone who works for him. The bottom line is that Governor Christie works for us, and he is ignoring us. He made his 'I am not expanding the medical marijuana program' speech the very same hour we took Sabina Rose off a ventilator -- the very same hour.
"I hope he signs this bill. Dravet syndrome can be a death sentence," Paula adds. "Until New Jersey can get the proper strain of medication, parents should be able to get it out of state. Seven children have died from Dravet syndrome since Sabina passed. That is a huge problem. Phil and I will keep fighting, because we'll show Rocco and all the other kids in our lives that when it gets tough, you don't give up -- you fight for what's right."