This story begins at 3 a.m. on a cold February night. Once again, I awake to my nine-year-old daughter violently convulsing next to me in the bed. It is her eighth seizure of the night and I know there are many more to come before she wakes, worn out and exhausted, but smiling and eager to cuddle before she starts her day.
The seizures don’t wake her; she sleeps through them all, but I don’t, and I barely rest between them. A sudden change in position, a slight shift in her breathing, a quiet laugh in the midst of her dreams have kept me on high alert throughout the nights since she was nine months old. I accept limited sleep as part of my life, and, while I am tired, so very tired, I’ve come to appreciate that these wakeful nights are when I do my best thinking.
My daughter suffers from Dravet syndrome, an unrelenting, unpredictable seizure disorder. It is a rare and catastrophic type of epilepsy that is extremely difficult to control. She will not outgrow it and there is no cure yet. The mortality rate for children with Dravet syndrome is high. Managing her condition requires constant care and hyper vigilance.
In late 2015, I enrolled my daughter in a clinical trial looking at the efficacy and safety of a new medication for children with Dravet syndrome. The active ingredient in this medication was CBD (cannabidiol, a non-psychotropic cannabinoid in cannabis (marijuana)). This specific cannabinoid has made headlines in the last couple of years for having helped control seizures in other children with Dravet syndrome. I do not know if my daughter got the medication or a placebo during the first phase of the trial, but once she moved into the second phase, she got the drug.
On this particular night, just days before she was to have her first dose of the medication containing CBD, I was feeling optimistic and hopeful that after reaching her target dose, her life, our lives, would change dramatically. I remembered a conversation I had with one of the paramedics who responded to a 911 call years before. He asked if I had ever considered medical marijuana; he said that his grandfather practiced medicine and early in his career, marijuana was prescribed for patients with epilepsy with good results. But then, it became illegal and people were denied an effective medication.
That night, as I lay next to my daughter considering the possibility of a brighter future, I decided that if CBD helped her, I would work to change the stigma associated with the plant. I imagined a shirt with a large cannabis leaf and EPILEPSY written inside, and envisioned my nine-year old wearing the message into the world, changing the outdated perception of cannabis as an addictive drug to an updated understanding of it as a life-changing medication.
As sleepless nights came and went and I learned more about medical cannabis, I realized that many conditions should be included in the leaf and that a simple, powerful, and positive message on thousands of shirts could affect change.
The CBD-based medication turned out not to be effective for my daughter. But I am not discouraged. There are many unanswered questions, compelling theories, and lines of inquiry to explore. There is much more to discover about this pharmaceutically active botanical and how we unlock it's full potential to develop treatments for conditions that have eluded conventional medications. So, I still believe that cannabis possibility for my daughter.
But that possibility can only be realized if we fund cannabis research. Support Cannabis Research is my humble part in making sure that happens.
For more information about Dravet syndrome, please visit Dravet Syndrome Foundation.