Matt and Paige Figi with children Charlotte, Max and Charlotte's twin sister, Chase. (Kathryn Mathis / Courtesy of Matt Figi)
Former Special Forces Staff Sgt. Matt Figi is stepping front and center into the debate to legalize medical marijuana after appearing in a CNN documentary that focused on the plight of his little girl.
After watching his daughter Charlotte fight a losing battle against a rare and violent form of epilepsy that wracked her with hundreds of grand mal seizures every month, Figi found hope in an online discovery while in Afghanistan that marijuana might help her.
Not only did it help, the improvement was so immediate and so dramatic that Dr. Sanjay Gupta cites it as one of the reasons he has reversed a years-long opposition to medical marijuana and now fully supports prescriptive pot.
“I have seen more patients like Charlotte first hand, spent time with them and come to the realization that it is irresponsible not to provide the best care we can as a medical community, care that could involve marijuana,” Gupta writes in an online op-ed piece introducing CNN’s documentary, dubbed simply “Weed.”
In 2009, Gupta wrote strongly against the medical use of marijuana in a piece for Time magazine.
“We have been terribly and systematically misled for nearly 70 years in the United States, and I apologize for my own role in that,” Gupta says now.
CNN’s chief medical correspondent says that not only is the potential for abuse of marijuana relatively low, but a growing body of evidence suggests it is an effective treatment for everything from post-traumatic stress disorder and Parkinson’s to multiple sclerosis and cancer.
All Matt Figi knows is that the cannabis oil his wife, Paige, now feeds their 6-year-old daughter every day has saved their child’s life.
“I still remember that call in Afghanistan after the first dose,” Figi tells OFFduty. “First it was a full hour with no seizures. That turned into a full day, then a full week. This was at a point when she was having 300 seizures in a week. It was round-the-clock. If you do the math, that doesn’t leave any time for the body to recover.”
Charlotte was just a few months old when her tiny body starting going into the violent convulsions. As the seizures became more and more frequent, doctors eventually diagnosed her with Dravet Syndrome, a severe form of epilepsy that attacks brain development.
Within a few years, their little girl was in a wheelchair, no longer able to form words, drool running down the side of her face between the constant waves of convulsions.
“We had tried every imaginable drug possible,” says Figi — at least 15 in all, “sometimes as many as four or five at the same time,” but Charlotte continued to slip away.
Figi, stationed at Fort Carson, Colo., with the Army’s 10th Special Forces Group, was regularly being called away from training and deployments as his daughter’s life hung in the balance in what turned into a stream of emergency room resuscitations and intensive care unit vigils. Doctors told Matt and Paige Figi to prepare for their daughter’s death.
Figi joined the Army in 2003, going directly into Special Forces. He first trained as an A-team engineer specialist and then, as he was promoted, transitioned into the intelligence field. Things got so bad with Charlotte that he decided to leave the Army in 2008, eventually landing a job as a contractor, racking up four stints apiece in Iraq and Afghanistan.
Never giving up hope, Figi spent his off-duty time downrange scouring the Web from his room in Kandahar for new options to help his daughter. That’s when he found a video on YouTube about a boy in California with the same condition as Charlotte who had shown improvement after ingesting marijuana low in THC — the part that gets the user high — but rich in another compound called cannabidiol, or CBD for short.
“I couldn’t have imagined something like this,” Figi says. “I was raised in a family that always said drugs were bad, just don’t do it.” Now he was persuading his wife to give their daughter pot.
After a long search, Paige Figi found two doctors who were willing to sign a prescription for Charlotte, unprecedented for someone so young.
Charlotte’s “been close to death so many times, she’s had so much brain damage from seizure activity and likely the pharmaceutical medication,” Dr. Margaret Gedde told CNN. “When you put the potential risks of the cannabis in context like that, it’s a very easy decision.”
With the help of friends, Paige Figi found a local supplier who had the right variety of marijuana plants available and created the first homemade tincture of cannabis oil.
More than a year later, his daughter continues to improve. “She’s a kid again,” Figi says. “She’s riding her bicycle. Her words are coming back. It’s amazing. I think her brain is actually repairing itself now.”
A local nonprofit organization called Realm of Caring Foundation now provides the cannabis nearly free that the family needs to keep Charlotte healthy. Otherwise, Figi isn’t sure they’d be able afford it.
It shouldn’t be this hard to get help, he says.
“It’s just ludicrous that marijuana has retained this Schedule I classification. It just seems like an amazing plant to me. I think the pharmaceutical companies are terrified about what we’ll find that it can do.”
Figi he says he knows personally of more than 200 seizure sufferers now finding relief through marijuana.
“The majority of them are kids, some as young as 3 years old,” he says. “It’s taking off like wildfire. I expect by this time next year there will be more than a thousand.”
As word of their success circulates, the family’s phone is ringing off the hook.
“We’ve definitely opened up Pandora’s box with this documentary,” he says.
Parents from across the country are calling for advice and more details.
“One of the first things people ask is, ‘Is she getting high?’ No, because the THC levels are so low it doesn’t work that way.”
Several military families have been among those calling for advice, some concerned about legal and security clearance implications.
“All I can tell them is that it hasn’t been a problem for me,” says Figi, who retains his top secret clearance for his defense contracting job.
He passes along the advice he’s gotten from military lawyers who have told him to make sure his wife is the one paying for and getting the marijuana. Military lawyers have told OFFduty that dependents are free to use marijuana, in states where it is legal, as long as the pot stays off military property.
Figi says his family won’t be leaving Colorado anytime soon.
“I can’t leave the state with my own daughter because the only medicine that helps her is still illegal in most of the country.”