He screamed, gyrated, turned purple. The strain on his body and mind left him unresponsive for hours. At 3 months, the seizures began to multiply, 300 to 500 a day.
Doctors pumped him full of medicines, which along with the near-constant seizures left him in a catatonic state, sleeping 21 hours a day. He went 4 months without crying.
“It was like having a little rag doll,” recalls his mother, Marisa Kiser.
But as he nears his second birthday, Ezra is down to fewer than 10 seizures a day. He is putting on weight. He holds his head up. He cries when he is hungry. He shows preferences for objects and colors. His dozen medications are down to one, and he is being weaned off that.
“He’s like a totally different child,” says his mother. “He’s finally getting an infancy that he never had.”
She credits a most unlikely drug: marijuana.
Kiser is among the hundreds of parents who have moved to Colorado in recent months or are planning to move to get access to a special strain of the plant. It is low in THC, the ingredient that gives users a “high,” but high in cannabinoids, or CBDs. That’s the ingredient that has shown amazing results in reducing seizures with minimal side effects.
They are marijuana refugees, families who have moved hundreds or thousands of miles away from loved ones for a drug that remains illegal for recreational use in 48 states and on the federal level. Their stories have sparked efforts in many states to relax marijuana laws and spurred research into how the drug reduces seizures.
This former teacher from a Southern Baptist family in South Carolina is as surprised as anyone to be here.
“You spend all your time saying, ‘Don’t do drugs.’ Now here I am and some of my students are contacting me and saying, ‘You live in Colorado and you give your kid pot?'” Kiser says. “I would never have thought in a million years I’d be in Colorado giving my kid cannabis.”
“But it’s working, so I’m not complaining one bit.”
On a January afternoon at a marijuana farm in a secret location in the Rocky Mountain foothills, Charlotte slumps over her mother’s shoulder. Sleepy, yes, but not obviously sick.
It wasn’t always this way.
Charlotte suffers from Dravet syndrome, a rare and incurable form of epilepsy that often begins in infancy and can lead to developmental disability and death. By 5, she was wheelchair-bound, fed with a tube, and catatonic from heavy drugs and up to 50 grand mal seizures a day.
Her mother, Paige Figi, was desperate, spending countless hours searching the Internet for some miracle. Two years ago, she thought she may have found it in the report of a father in California who had some success reducing Dravet seizures with marijuana that is high in CBDs. She read how pot growers had increased the THC in plants in recent decades. So why couldn’t it be bred to be low in THC but high in CBDs?
“When you are at the end of the line, when you have intractable epilepsy in a child that’s not doing very well, you look into every little teeny tiny thing,” says Figi.
Fortunately for her, she lives in Colorado, which has one of the largest medical marijuana industries in the country. And through a friend, she met Joel Stanley.
One of five brothers in the medical marijuana business, Stanley had been experimenting with plants high in CBDs.
“We were breeding for CBDs, not specifically for intractable epilepsy, but for auto-immune disorders, its potential cancer-fighting effects,” Stanley says. “There are a lot of people who would like to partake in the medicinal benefits of this plant and some of us don’t like to get high, like me.”
Figi convinced him to grow more of this marijuana with a CBD to THC ratio of 30:1. Then she convinced the state to give a medical marijuana license to a 5-year-old, the youngest ever on the state registry.
After her first dose of oil made from marijuana, Charlotte went seizure-free for a week. Figi was in disbelief.
“I went back to my notes. ‘What else did I change that day?’ I thought. ‘There’s no way this benign substance is treating her seizures after we tried every pharmaceutical available,'” she says.
Two more months passed. Charlotte starting walking and talking, feeding herself. She began learning things and making friends.
Two years later, she is down to 1 or 2 seizures a month, Figi says.
As for the strain of marijuana that would someday give hope to hundreds of families, Stanley named it “Charlotte’s Web.”
In a Colorado Springs coffee shop on a January afternoon, it’s alphabet time. “What word starts with ‘I?'” her tutor asks.
“Ice cream!” Sydni screeches. If not for the helmet she wears and her speech, limited for a 9-year-old, you wouldn’t even know she is sick.
A normal child until age 4, she began having seizures, which grew in intensity and frequency until she was left “in a drooling fog,” says her mother, Holli Brown.
Sydni has an intractable form of epilepsy, meaning medications don’t control seizures. There is no known cause and no known cure. By last summer, Brown had tried everything but brain surgery. Then she came across a YouTube video about Charlotte and Zaki, an infant whose seizures have vanished from taking Charlotte’s Web.
Two weeks later, Brown left Kansas City and signed a lease in Colorado Springs. After 3 months on Charlotte’s Web, Sydni is a different child. Her previous record without a seizure was 4 days. She now beats that regularly.
“We’ve seen some things from Sydni that we hadn’t seen since before the seizures started: her word use, her cognitive abilities, her clarity, her playfulness, her emotions,” Brown says. “She gets excited about stuff. She gets lovey, cuddly. She used a 10-word sentence yesterday. Normally I’m happy if I get 2 or 3 words out of her.”
“She’s just starting to shine through.”
The YouTube video was only the beginning. Families like Figi’s began telling their stories in the media, including a CNN report featuring Charlotte, in which longtime medical marijuana opponent Dr. Sanjay Gupta publicly changed his mind.