Charlotte’s Web: A father’s Plea for daughter

It’s an unfortunate situation. A plant capable of providing medical benefits to patients suffering a host of illnesses and congenital conditions, like childhood epilepsy, is legislated rather than managed by the medical community. As a result, families like that of Vivian Wilson’s, are faced with making hard choices about where they call home to have access to a medicinal form of cannabis to treat her Dravet Syndrome.

Epilepsy and Cannabis

Dravet Syndrome is a rare and catastrophic form of intractable epilepsy that begins at infancy. The disease is characterized by febrile seizures, or fever-related seizures, which occur frequently and are capable of lasting up to 45 minutes in Vivian’s case, inducing stress on the brain and other vital organs. As a result, growth and general childhood development are disrupted causing motor impairment and cognitive disabilities. Much worse, there is a high incidence of Sudden Unexplained Death in Epilepsy, or SUDEP.

Vivian’s seizures could be life ending

In Vivian’s case, seizures are triggered by seeing patterns, requiring her to wear a patch over one eye and staying indoors to reduce stimuli. Dravet Syndrome does not respond well to the medications approved for treatment. However, there has been some success with Charlotte’s Web, a low-THC strain of medicinal cannabis.

In 2013, after several attempts to contact the governor to setup a meeting, Vivian’s father Brian Wilson approached New Jersey Governor Chris Christi at a campaign stop in his hometown. Brian Wilson knew of other stories of epilepsy and cannabis, and lives changed. He questioned Christi about a bill he had yet to sign that would expand the legalization of medicinal cannabis in an edible form for children that would benefit his daughter, quite possibly saving her life. CNN interviewed Brian Wilson giving Vivian’s story national attention. Christi signed the bill into law, though it would take several more months for New Jersey to produce the first edible medicinal products legally allowed for children.

Vivian’s family moves to Colorado

The Wilson family relocated to Denver in early 2014 to gain full legal access to Colorado’s medical cannabis. Their decision to move was accelerated by the tragic death of a 15-month-old girl suffering Dravet Syndrome in December 2013. They felt they couldn’t afford to wait on New Jersey to provide the necessary treatment for their daughter. By this time, Vivian was suffering 50 to 200 seizures a day.

Maryland Provides for treating seizures with cannabis

If you are a parent of an epileptic child in Maryland, this does not have to be your story. Maryland’s legislature has already passed House Bill 881, specifically stating that seizures are a qualifying symptom for the prescription of cannabis.