My 9-year-old daughter, Kalie, has Dravet syndrome, a rare epilepsy syndrome that causes frequent dangerous seizures with debilitating effects. She started having seizures when she was 6 months old, and since then has experienced hundreds of seizures and dozens of hospitalizations.
Despite this, Kalie is a beautiful, happy little girl who tries to keep her disability from defining her, but some days it seems impossible. Every day, twice a day, I give my 45-pound daughter seven different medications to try to suppress her seizures, but they don’t always work. Even when they do prevent her seizures, the medications take their toll with both temporary and persistent side effects, and I can see how she suffers.
Kalie is one of 800 people with Dravet, and one of 3 million Americans who suffer from some form of “intractable epilepsy,” epilepsy causing frequent, uncontrolled seizures that can lead to brain damage and even death.
Typical anti-seizure medications don’t treat the underlying causes of Dravet. Even when seizures are stopped, the trade-off in quality of life can be devastating. This is why our family has been overjoyed by the potential of cannabidiol (CBD) to help treat Dravet syndrome. CBD is a nonpsychoactive medical marijuana oil that has recently been used to treat Dravet and other pediatric seizure disorders, with great success.
Because it is still illegal to access and treat Kalie with CBD, we have not been able to try the treatment yet, but have seen many other families’ life-changing results. We’re hopeful that Senate Bill 143, which sets up a framework for Louisianians to access CBD and was signed by Gov. Bobby Jindal this summer, will help us treat Kalie soon. We pray that this compound, or one yet to be discovered, could help Kalie live a full life, and this is why I support medical marijuana.
Many other Louisianians, including leaders like Gov. Jindal and U.S. Sen. Bill Cassidy, recognize the merits of medical marijuana, but there are those who are far behind the times. As one of the first states to pass legislation for a medical marijuana research program (in 1978), I would hope Louisiana’s elected officials are fighting for our right to treatment, but that is not the case. It’s hard to believe, but Congressman John Fleming, of Shreveport, said only a few months ago that “this whole idea of medical marijuana is a big joke.” This was the same day he opposed an amendment that would protect families using CBD from federal prosecution and said he’d rather “let this thing play out.” Those of us who watch our children fight a losing battle each and every day don’t have the time for this to “play out,” and we certainly aren’t laughing at the “big joke.”
Thankfully, the House went on to pass the amendment protecting CBD families, but Fleming still voices loud opposition to medical marijuana. Unfortunately, his voice may get even louder now if he runs for the U.S. Senate. I know that if Fleming were to represent the state of Louisiana in the Senate, he would not be looking out for my daughter’s best interests; he would be actively opposing them. I worry that he would sabotage the Senate’s progress on medical marijuana reform and even try to roll back recent wins. He would certainly be out of sync with his counterpart, Cassidy, a physician who defends the rights of patients to access medical marijuana when necessary.
As the mother of a child with Dravet syndrome, I often feel powerless to help my daughter. I watch her seize for hours at a time, I rush her to the hospital again and again, and I see her struggle to grasp a normal routine. As a parent and a caregiver, I should be able to offer Kalie any treatment that shows promise, without obstruction from zealots like Rep. Fleming.
My family fights Dravet every day; we shouldn’t also have to battle those elected to help us. My daughter, and the thousands of Louisianians who would benefit from CBD or another form of medical marijuana, need a senator who will fight with us, not against us.
Brittany Osborne lives in Baton Rouge.