Christine is a pediatric nurse practitioner from Rochester whose seven-year-old daughter, Julia, suffers from refractory epilepsy, meaning she has seizures that are not well controlled by anti-seizure medications. Until recently, Julia was having from 80-100 grand mal seizures a month. More recently, her seizures have diminished through a combination of the ketogenic diet and Clobazam, a drug in the benzodiazepine family and Stiripentol (a non FDA approved medication). But Clobazam’s side effects are severe and very disruptive for a seven year old. Julia can rarely make it through a full day of school because Clobazam causes fatigue, confusion, nausea and mood swings. She is already one-and-a-half years behind her peers because of the constant disruptions to her education.
The onset of Julia’s epilepsy happened when she was four years old, and Christine remembers what she was like before she became ill. “I miss my little girl the way she was before the seizures,” she says. “Now, she is so sick and so sad, it’s almost unbearable.”
Christine and her husband, Tim, who is a Quality Assurance Manager for a biotechnology company, have read the research on cannabidiol (CBD), the non-toxic, non-psychoactive compound found in the cannabis plant that has been found to significantly reduce seizures in children without side effects. “If I could get my hands on CBD I would give it to my daughter without hesitation,” Christine says. “Based on my own experience as a pediatric nurse practitioner and what I’ve read and seen, I’m very sure that Julia would benefit from it. If Compassionate Care doesn’t pass in 2014 in New York, my family will have to join the other “medical marijuana refugees” in Colorado,” where CBD is legal and obtainable, she says.