“Today’s the day, buddy. We’re not going to have any more of those,” his mom Valarie Weaver, 36, said she told her son as the headed to his first treatment Tuesday.
Her son can't see, walk or talk, Weaver said. Although he's 7, his behavior is more like that of a 2-month-old. But he lights up when he goes in the water and he seems to love the feel of the sun and the wind, Weaver said.
"Our hope is that this treatment will calm down his brain enough so that he will start communicating with us," she said.
Many of the drugs available to treat the syndrome don’t work long term, especially for children. Even with more than a dozen medications Weaver has had no relief.
The active ingredient in Epidiolex, the experimental drug that Weaver and one other child are receiving, is called cannabidiol. It’s also the main active ingredient in marijuana though it doesn’t produce a high.
Dr. Michael Diamond, the interim senior vice president of research for Georgia Regent University said the drug is not legal or approved for use by use by the Food and Drug Administration. The university’s current study, one of only a handful of trials for compassionate use being held around the country, will expand to include 50 children over the next few weeks.
“We are hopeful the drug will reduce the frequency and severity of seizures within a month, but we know it will not work for every child,” he said.
“No one with a heart could hear the stories of these children and their parents and not want to exhaust every possibility to provide them with the treatment they need to combat this debilitating condition,” said Deal
Weaver told ABC News that she was grateful her son was accepted into the trial though she was disappointed the state legislature had narrowly failed to pass a bill that would have legalized the drug for use with sick children. But, she said, she’s not giving up.
"Even though Preston is on it, Preston and I are still going to fight for all the other ones too, we will be at the capital every single time, we need to be there until this becomes legal and every child in the state has the option for this treatment if they need it," Weaver said.