Monday, June 9, 2014


~Some of the details in this testimony have been changed in order to protect this family.

 Have you ever seen the movie "Awakenings"? It’s based on a true story about a neurologist named Oliver Sacks who begins an experimental drug therapy on a group of patients who survived the 1917-1928 encephalitis lethargica epidemic only to be left in a catatonic state. I remember watching this movie in the early 90’s and I was absolutely intrigued by the idea of something bringing these people back to life. I find it ironic now that I’m watching this happen in real life with my own child.

Just a few months ago, I feared that I would lose my daughter to epilepsy. She was suffering from hundreds of seizures everyday. She was catatonic throughout most of the day. I only bothered sending her to school because I knew that she would be safe there and I could rest a little and possibly make up for the insomnia I had been having. If you don’t have a child who suffers from a life threatening condition, you may not understand how difficult it is to allow yourself to sleep at night. I called it “half sleep”... that place where you let your body relax but keep your mind going, just in case you hear them seizing and need to administer rescue meds.

My daughter, let's call her “Elizabeth”, had forgotten almost everything of importance. She would no longer recite her ABC’s or sing. At times, I wondered if she even knew who I was anymore. Her father could barely look at her without being brought to tears. I found myself comforting him almost as much as I comforted her. She lost the strength to feed herself and she now spent a great deal of time sleeping. Now remember, all of this had occurred in spite of treating her with the best of what Western medicine had to offer.

At some point, about 3 months ago, as a family, we decided to cast aside our fear of the law and begin treating Elizabeth with Cannabidiol Therapy. We had long since cast aside our respect for lawmakers, so it seemed appropriate to come to this. It didn’t take long to notice subtle changes in her behavior. I found her gazing at me at times and she’d maintain that gaze even after our eyes would lock. She began to smile again and giggle again. Her energy level rose and it seemed that the task of holding a fork was no longer cumbersome for her.

We weren’t seeing much in the way of seizure control, but I thought as long as we were seeing an improvement, we should continue. After all, when your child is in an almost coma-like state, just to hear them speak again sparks an amazing flicker of hope. Looking back, what we were noticing most was that she would recover so quickly from seizures. Remarkably, her postictal periods were shorter in duration with each passing day.

And then it happened. She had her last seizure on the evening of Mother’s Day. On Monday, when she went an entire day without even having one, I thought, “Wow! That’s never happened. How wonderful for her to have a seizure-free day!”. Then day 2 passed, then day 3, and so on. We’re now at day 23. I think she may have had 2 very small seizures in her sleep that first week. I could only tell because of a steady tapping of her left foot and an excessive amount of drool on her pillow. But even with those, she’s avoided having somewhere near five thousand seizures because we decided to become criminals.

I’m not suggesting for one moment that every parent of a sick child in PA should make this decision, but I’m sure glad I did. I think it’s important for me to tell this story because I know there are still members of our legislature who doubt the efficacy of this medicine. But, I must ask, when do these “anecdotal” reports just become reports? At what point will parents speaking lead to legislators listening? Will seeing these children awaken inspire our leaders to wake up themselves? How many more parents will be forced to break the law in order to avoid burying their children?

I am reminded each day of one of my favorite quotes. “If a law is unjust, a man is not only right to disobey it, he is obligated to do so.” ~Thomas Jefferson

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