NJ's strict medical marijuana laws cost my daughter her life: Opinion

Sabina Joana was a beautiful child, but Dravet syndrome caused her to have many epileptic seizures daily. Her parents attempted to enter the state's medical marijuana program, but Sabina died before she could be helped. She was 15 months old. (Photo courtesy Paula Joana)

By Paula Joana Six months ago, I lost my precious girl. I had to make a terrifying decision, with her daddy, to take my 15-month-old daughter off a ventilator. Six months ago, I learned how badly the New Jersey medical marijuana program really was failing. My daughter was born Aug. 21, 2012. She was a perfect baby, cute as a button. I could never imagine life without her. Then I was forced to live without her. On Feb. 6, 2013, Sabina had her first seizure. To say that I was completely terrified was an understatement. We took her to the local emergency room and had numerous tests done. Everything was normal. Sabina continued to be a normal baby, even after the second and third seizures. We didn’t understand. Then the medication started to come into play. Phenobarbital, a medication that is not FDA-approved, is what we had to give her. I hated it. We went on to Topamax then to Keppra. Nothing worked. I always wanted to keep her life as normal as I could. We found a day care that would care for her three days a week. She loved it. I have never met more wonderful people than when I met the women who work there. They loved my girl so much. Looking back, I am so grateful she had that experience. In August 2013, we finally got a diagnosis of Dravet syndrome, a rare and severe form of epilepsy. I wanted to throw up. I could not believe this. I was so mad and scared for her. What was her life going to be like? My girl was a warrior, as are all kids with this haunting disease. Sabina could have up to 80 seizures a day. Unless she was physically hurt, she never missed a beat. We went through the summer pretty uneventfully. We were even able to take her to Wildwood. She saw the sunset and had ice cream and put her little toes in the sand. I didn’t know that would be her only time to experience that. When August came, we saw Dravet syndrome rear its ugly head again. She spent her first birthday in the intensive care unit. All I could do was cry. September greeted us with a trip to see a specialist for a second opinion. We spoke about our options and we knew that medical marijuana was her option for a normal life. The edible form of medical marijuana has been used to treat children with Dravet syndrome. Scientists say it quiets the excessive electrical and chemical activity in the brain that causes seizures. Children have been treated legally in Colorado, but New Jersey has significant barriers preventing the drug from reaching patients. My girl was a warrior, as are all kids with Dravet syndrome. With no choice, we began the process. We jumped through all the hoops to obtain a medical marijuana card — all the charts, the test results, the endless doctor notes of recommendation, the psych evaluation. But just when we thought relief was in sight and the registered doctor went to submit her application, it was too late. Nov. 26, 2013, was a night I will never forget. It was bedtime and I noticed she was anxious, so I took her into bed with me. We fell asleep. I awoke to put her into her own bed, which now haunts me. When her dad went into her room, she was unconscious. He screamed out for me to get the rescue meds and call 911. My heart dropped. Sabina was put into a coma. We learned she was brain-dead. On Dec. 2 at 2:06 p.m., her daddy held her as her heart stopped. That was the worst moment in my life. A part of us died when she died. What do I do now? Has the medical marijuana program in New Jersey gotten better? Not at all. The reality is that the people in charge of the medical marijuana program don’t have sick children. They don’t have an urn with their daughter’s name on it. They don’t have a sense of urgency or desperation or fear dwelling in their minds. Until now. Whatever the reason the state has is invalid. My daughter died on their watch. I will work endlessly to try to change the way this program works. I will never stop or be backed into a corner. I will not settle. Political agendas kill people. It killed my daughter. In six more months, it will be a year. I still don’t know how to live without her. Paula Joana lives in Hopatcong.