If you’re like most parents, you don’t look forward to the day that your child first tries marijuana. But I do. My daughter Anna is not like most 8-year-olds. Before her first birthday, she was diagnosed with Dravet syndrome, an intractable form of epilepsy, and after years of battling the condition together we think medical marijuana may be one of our last hopes to alleviate her suffering.
Anna’s condition has led us to Women and Children’s Hospital of Buffalo more than 70 times, with hospitalizations sometimes lasting three months. Despite trying every anti-epileptic medication, diet and supplement prescribed by her team of neurologists, Anna still has daily seizures.
Her seizures last up to three hours at a time, a terrifying experience for any parent to witness and certainly more painful for Anna to suffer through. When the rescue medications she’s prescribed fail, paramedics transport her to the emergency room where she is anesthetized to break the seizure. Anna’s immune system is weakened by all the anti-epileptic medications, which leads to a vicious cycle of more seizures and more emergency room visits.
The toll on our family is devastating physically, emotionally and financially. In the month of June alone, we know of four children with Dravet’s who lost their lives due to epilepsy-related conditions. We fear that will be Anna’s fate if her seizures are not controlled.
The cost is significant. After exhausting medication options in the United States, we began importing different drugs from Europe. (At first we bore the burden of the imported medications, but now at least Anna receives assistance through New York’s Medicaid program). The cost of hospitalizations has run into the hundreds of thousands of dollars.
Several weeks ago, I watched a CNN documentary about medical marijuana hosted by a former skeptic, chief medical correspondent Dr. Sanjay Gupta. He profiled a little girl with Dravet’s. Charlotte lives in Colorado, a state that allows legal access to medical marijuana for seriously ill adults and children, and her parents have reduced or eliminated many of her medications as she experienced a marked decline in seizures after using medical marijuana.
Recently New Jersey Gov. Chris Christie expanded access to medical marijuana in that state in part to respond to pleas from parents who needed access for their severely ill children. Across the country, 20 states and the District of Columbia have approved medical marijuana programs for people who have a serious illness or disability. I don’t feel I should have to uproot my family to get proper access to medications for Anna, but that’s the reality I face because my child’s life is at stake.
I’m shocked, saddened and disappointed that families like ours are made to wait any longer for a therapy that has proven successful in other states. Medical marijuana gives us hope that our child will not have to suffer the violence of daily epileptic attacks and countless side effects from medications that offer her little respite.
I urge the governor and our state legislators to prioritize the Compassionate Care Act, a bill that would provide safe and legal access to medical marijuana for New Yorkers with serious and debilitating illness. Otherwise, the state threatens to make a criminal out of me, my family and our little girl as we fight for Anna’s life.