Brooke Adams stretched across a gray sectional in her Rincon Valley home Tuesday, playing educational games on an iPad.
Like many kids her age, the red-headed, pigtailed 5-year-old girl can count to 20. She also knows most of her letters.
But Brooke was diagnosed before her first birthday with Dravet Syndrome, a rare form of epilepsy that causes frequent and long-lasting seizures. The first seizure came when she was only a few months old, said her mom, Jana Adams.
“She frequented the ER for the first few years of her life,” she said. “It’s in her genes, so she’ll never get out of it.”
After trying pharmaceuticals that did little to prevent seizures, Adams said they turned to daily doses of cannabidiol, a marijuana compound also known as CBD, and THC oil to fend off Brooke’s convulsions. Larger doses of the THC medication are applied to her gums when seizures strike.
“CBD is more like maintenance,” Jana Adams said. “The THC actually works like a rescue medication. It stops (the seizures) within three minutes, and that’s really the life-saving part for us.”
But the critical medication, which has helped cut down seizures to about once a week, is now preventing Brooke from attending kindergarten, her mom said.
The Rincon Valley Union School District does not allow students to use the cannabis-based oils on campus, even for medical reasons. District officials point to several state and federal rules that prohibit allowing the medication onto school grounds.
Brooke’s lawyer, Joe Rogoway, said the rules conflict with the Americans with Disabilities Act and the Individuals with Disabilities Education Act, which requires public schools to provide children with disabilities needed services and accommodations.
A state judge on Wednesday and Thursday will hear arguments on the school district’s decision to bar the girl from taking the medicine on campus, a case that highlights legal barriers prohibiting medical marijuana in schools.
“Fundamentally, what this is about is giving a 5-year-old the ability to go to kindergarten, while at the same time having access to medicine that the voters of California have said several times is appropriate,” Rogoway said. “Federal law says the school has to accommodate her medical needs.”
Currently, states like Maine, New Jersey and Colorado have made exceptions for students whose doctors approve the use of medical marijuana, allowing parents or authorized caregivers to administer the drug.
California Sen. Jerry Hill, D-San Mateo, pushed for similar legislation in February, introducing a bill that would give schools the option to allow parents or guardians to administer medical marijuana to their children. But the bill, currently in the California Assembly, would prohibit the medication from being kept at schools.
Jana Adams said her daughter wouldn’t benefit from the proposed legislation because the seizures happen sporadically and need to be immediately treated with the THC oil, rather than wait several minutes for her to reach the school in an emergency.
“What Brooke needs is someone at the school to administer and keep it on campus,” Rogoway said.
The Rincon Valley Union School District did accommodate her daughter two years ago when she started preschool. The district paid for Brooke to attend Humboldt Community Preschool, a Santa Rosa private school that agreed to let her bring the cannabis-based medication in case of emergencies, Adams said. The school also provided her daughter with a nurse who goes to school with her.