Saundra Young at CNN: In Colorado, parents Matt and Paige Figi struggled with trying to help their daughter Charlotte, suffering from long, untreatable seizures. Eventually, she was diagnosed with an extremely rare form of epilepsy called Dravet Syndrome. Its seizures cannot be controlled through conventional medication. They tried everything. Matt, having given up a military career, searched for anything else that could help as Charlotte was slipping away from them:Here, have a good kick in the feels, courtesy of
He found a video online of a California boy whose Dravet was being successfully treated with cannabis. The strain was low in tetrahydrocannabinol, or THC, the compound in marijuana that's psychoactive. It was also high in cannabidiol, or CBD, which has medicinal properties but no psychoactivity. Scientists think the CBD quiets the excessive electrical and chemical activity in the brain that causes seizures. It had worked in this boy; his parents saw a major reduction in the boy's seizures.
By then Charlotte had lost the ability to walk, talk and eat.
She was having 300 grand mal seizures a week.
Her heart had stopped a number of times. When it happened at home, Paige did cardiopulmonary resuscitation until an ambulance arrived. When it happened in the hospital, where they'd already signed a do-not-resuscitate order, they said their goodbyes. Doctors had even suggested putting Charlotte in a medically induced coma to give her small, battered body a rest.
She was 5 when the Figis learned there was nothing more the hospital could do.
They decided to give medical marijuana a try, even though Paige said she had voted against legalizing it. They struggled to find doctors who would sign off. Even though Colorado’s medical marijuana program recognized it as a valid treatment for seizures, Charlotte was so young. Studies have shown that marijuana use while the brain is still developing can have negative impacts on IQ and other potential mental problems. Given the severity of Charlotte’s situation, though, would it be worse than what she was already suffering through?
[Paige] finally reached Dr. Margaret Gedde, who agreed to meet with the family.
"(Charlotte's) been close to death so many times, she's had so much brain damage from seizure activity and likely the pharmaceutical medication," Gedde said. "When you put the potential risks of the cannabis in context like that, it's a very easy decision."
The second doctor to sign on was Alan Shackelford, a Harvard-trained physician who had a number of medical marijuana patients in his care. He wasn't familiar with Dravet and because of Charlotte's age had serious reservations.
"(But) they had exhausted all of her treatment options," Shackelford said. "There really weren't any steps they could take beyond what they had done. Everything had been tried -- except cannabis."
So they tried it:
"We were pioneering the whole thing; we were guinea pigging Charlotte," Paige said. "This is a federally illegal substance. I was terrified to be honest with you."
But the results were stunning.
"When she didn't have those three, four seizures that first hour, that was the first sign," Paige recalled. "And I thought well, 'Let's go another hour, this has got to be a fluke.' "
The seizures stopped for another hour. And for the following seven days.
Charlotte is now 6 years old:
Today, Charlotte, 6, is thriving. Her seizures only happen two to three times per month, almost solely in her sleep. Not only is she walking, she can ride her bicycle. She feeds herself and is talking more and more each day.
"I literally see Charlotte's brain making connections that haven't been made in years," Matt said. "My thought now is, why were we the ones that had to go out and find this cure? This natural cure? How come a doctor didn't know about this? How come they didn't make me aware of this?"
The marijuana strain Charlotte and now 41 other patients use to ease painful symptoms of diseases such as epilepsy and cancer has been named after the little girl who is getting her life back one day at a time.
It's called Charlotte's Web.
"I didn't hear her laugh for six months," Paige said. "I didn't hear her voice at all, just her crying. I can't imagine that I would be watching her making these gains that she's making, doing the things that she's doing (without the medical marijuana). I don't take it for granted. Every day is a blessing."
Matt added, "I want to scream it from the rooftops. I want other people, other parents, to know that this is a viable option."