Medical Marijuana: The Last Hope for Sick Children
Desperate for help, families take extraordinary steps to help children wracked with seizures.
Meet Charlotte continued...
"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."