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Long Search For 6-Year-Old’s Seizure Relief Ends With Medical Marijuana

Before she started using medical marijuana, Charlotte Figi was suffering from seizures lasting 2 to 4 hours that landed her in the hospital and several times stopped her heart. She lost the ability to walk, talk, and eat, and her parents said their goodbyes on several occasions. Doctors had her on seven different potent, addictive medications; they had her on a special diet. But each time, the benefits were only temporary, and the side effects were overwhelming.

Charlotte’s mother, Paige Figi, had voted against the Colorado medical marijuana ballot initiative that passed in 2000. But after doing some research, she and her husband Matt changed their minds. They found a video of a young boy in California who suffered dramatic seizures and whose life had been changed by a strain of medical marijuana.

The Figis called doctor after doctor to find two who would sign off on a medical marijuana card for their five-year-old daughter. “Everyone said no, no, no, no, no, and I kept calling and calling,” Paige told CNN. Eventually, they found a Harvard-trained doctor who treated other medical marijuana patients. He found a strain similar to the one used by the little boy in California — low in the psychoactive component of marijuana, THC, and high in another chemical compound known to be therapeutic, CBD. She takes it in liquid form, twice a day. The seizures stopped, and they were determined to find more than the initial two ounces they had procured for $800.

To find a steady supply of the substance, they turned to brothers known as the “Robin Hoods of marijuana” who ask patients to donate only what they can. Forty-one other patients with seizures and cancer are now using the strain that’s been named Charlotte’s Web for its first user.

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Now Charlotte is feeding herself, walking, and riding her bike. She usually only has one seizure a day, and usually in her sleep.

But Charlotte’s parents have expressed the terror of having to give their child a substance that is federally illegal, and they question why they “were the ones that had to go out and find this cure,” which they point out is “natural.” “How come a doctor didn’t know about this?” Charlotte’s father Matt asked in an interview with CNN.

The answer is that research proposals on the benefits of marijuana are suppressed by agencies designed to enforce prohibition, not explore the benefits of marijuana and other drugs. For a researcher to use marijuana in a study, it has to obtain a legal, approved source of it from the federal government through the National Institute on Drug Abuse. They usually say no. Federal funding that is the lifeblood of much academic research is also withheld for medical marijuana research. As a result, Charlotte’s parents don’t have all the information they need, and other people suffering from other disorders are left to find their own way like the Figis did.

But the Figis are lucky enough to live in one of the 20 states where medical marijuana is legal, which largely insulates them even from federal criminal prosecution. Suppliers of medical marijuana in these states, however, are not immune from criminal crackdowns, even when they are seeming models for compliance with state law. A recent survey found that the overwhelming majority of U.S. doctors — 76 percent — would prescribe medical marijuana to their patients.