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A New Jersey father confronted Gov. Chris Christie with a painful plea Thursday: "Don't let my daughter die."
Brian Wilson was talking about his two-year-old daughter Vivian, who suffers from Dravet Syndrome, a form of epilepsy that causes seizures.
"Every day is a struggle with Vivian, not knowing what kind of seizure she faces for that day, if she's going to have one that sends her to the hospital," Wilson said in an interview with CNN's "The Lead with Jake Tapper."
The Wilsons lobbied New Jersey state legislators, who quickly passed new legislation to make it easier for kids to access the state's legal medical marijuana system. But the bill has been sitting on Christie's office for nearly two months.
Vivian experiences violent seizures on average every four days. She sleeps with a heart and oxygen monitor, and she wears an eye patch, because viewing patterns bring on more seizures.
She is on a diet that helps limit the seizures, and a couple medications. But it is not enough, said her father. She is already suffering developmental issues and has the functioning ability of a one-year-old. Her parents want to give her a form of medical marijuana which has limited seizures for other children in states like Colorado and California, giving them a better life.
"With Dravet Syndrome and all forms of severe epilepsy, these seizures can be life ending. They're extremely taxing on your heart, on your respiratory system, on your brain. Vivian has stopped breathing twice during the course of an extended seizure. She has seizures that will last 45 to 60 minutes," said Wilson.
The medical marijuana that could ease Vivian's seizures would have a low dosage of THC (tetrahydracannabinol, the intoxicating chemical in marijuana), and would likely come in the form of a lozenge, or other edible form.
"Without us being able to control her seizures, and pulling her out of that zone of constant seizure activity in the brain, she's constantly at risk," said Wilson.
Wilson's conversation with Christie on Thursday was intense, but he said he does not believe the governor heard him.
"I knew going in that he had no desire to talk to us. We tried to arrange some conversations with him ahead of time. We called the office, we tried calling, we tried setting up an appointment," said Wilson.
"Based on the conversation and the way he tried to get past me right away, I kind of knew he didn't want to have this conversation with me in the public forum," said Wilson. But "we were kind of left with the last few days, we were coming down to the wire, he was in my hometown, and I had to go talk to him and try to convince him to sign this."
CNN's Chief Medical Correspondent Dr. Sanjay Gupta profiled a similar case in the documentary "Weed." He told the story of a 6-year-old girl with Dravet Syndrome whose parents saw a vast improvement after using a strain of medical marijuana.
"There aren't a lot of studies specifically on Dravet Syndromes, there are studies looking at seizure disorders overall and the use of cannabis," said Gupta. "This is one of those situations where we know what the options are, and none of them really work except high CBD cannabis."
If governor Christie vetoes this bill, Wilson said his family will likely move.
"We really don't have a choice except to leave our family, friends, grandparents, leave everything we've known and grown up with, and have to vacate our state, and be kind of run out of town," said Wilson.
"It's either that or stay in New Jersey and suffer," said Wilson.
Christie said he will make his decision on whether to sign the bill Friday.
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The Lead with Jake Tapper draws not only on Tapper’s deep knowledge of politics and national issues, but also seeks to examine and advance stories across a wide range of topics that demonstrate his own curiosities and interests. Compelling headlines come from around the country and the globe, from politics to money, sports to popular culture, based on news drivers of the day.
The Lead with Jake Tapper airs weekdays at 4 p.m. ET.
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