Ten-year-old Alexis Carey of Boise, Idaho, has a rare but intractable form of epilepsy, Dravet Syndrome. The genetic disease causes severe and multiple seizures, which often leave parents guessing if the terror of watching their child seize up will pass or turn fatal. Her family learned that oil extracted from marijuana had helped other children and wanted to see if it would help Alexis too. "Parent to parent, when you're in a small community and 10 people that you know are all having success, that's no longer anecdotal," says mom Clare Carey. "That's hope." But Idaho's stringent marijuana laws do not allow for medicinal use. The family began lobbying lawmakers to decriminalize the oil almost two years ago. Now, they've got some legislative backers and an upcoming hearing.
Twelve states have legalized the oil while still banning medical marijuana. Marijuana extract oil first received attention when a Colorado family fought and won for access for their daughter who also had Dravet Syndrome. It is similar to hemp oil, which is legal in Idaho and can be bought in grocery stores. With no known cure for Dravet Syndrome, children are often prescribed a cocktail of medications to counter the seizures. However, the heavy drugs can permanently damage a child's developing liver, kidneys, and other organs. Proponents of cannabidiol oil, a non-psychotropic extract of marijuana, argue that it reduces the amount and length of seizures in children. Over time, Carey hopes that the oil would also reduce the number of medications her daughter relies on. "You never give up hope that you can get complete seizure control," she says. "Children die from Dravet by any one of the seizures. Alexis could have a seizure that may not stop, we never really know."