Six-year-old Izaiah Ruiz loves football, playing outside and riding on his great-grandfather's tractor. He smiles and laughs all the time, and recently received the citizenship medal at his school for always jumping at the chance to help his classmates when they're in trouble.
"He is the sweetest, most loving boy," said his grandmother, Lori Fountain, who lives with Ruiz in Conroe, Texas. "If he sees a little boy or girl fall down, he will always ask them if they're OK, with such sweet sincerity."
Ruiz has suffered from Dravet Syndrome, a debilitating disorder that can cause him to have more than 100 seizures a day, since he was 2 months old. He rides in a specially equipped stroller with an oxygen tank strapped to the back. He wears a brace on his right leg because the persistent convulsions have weakened that side of his body, and he wears a cooling vest when he plays outside so his body won't overheat. Fountain, his legal guardian, sleeps beside him every night in case he has a seizure in his sleep.
"I don't ever leave him alone," said Fountain, who volunteers at Ruiz's school so she can be near him during the day. "They can happen at any time. He's had seizures in the bathtub, sitting on the potty. ... I have woken up to him having a seizure in the bed in the middle of the night. Sometimes we spend up to three weeks in the hospital just getting him well."
Ruiz takes three different seizure medications a day, but they have done little to address the problem, and produce a variety of side effects, from weight gain to near-constant drowsiness. Then last year, the family was offered a glimmer of hope. Ruiz's neurologist at Texas Children's Hospital told Fountain about a first-of-its kind drug being developed from marijuana plants specifically to treat early childhood epilepsy.
The drug, Epidiolex, is derived from cannabidiol, or CBD, a non-psychoactive compound in the cannabis plant that doesn't produce the "high" feeling commonly associated with pot. Last year, the Food and Drug Administration approved a series of clinical trials to test Epidiolex's efficacy at treatment centers around the world, including 10 in the United States.