Charlotte Figi (2006–2020) — 300 Seizures a Week to Two or Three a Month

300 seizures a week. A strain called Hippie's Disappointment. A CNN documentary that changed American public opinion on medical cannabis. Dead at 13 of likely COVID-19.

October 18, 2006

Born in Colorado Springs, Colorado

Charlotte Figi is born a healthy twin in Colorado Springs. Her first seizure occurs at three months of age.

Dravet syndrome

Charlotte's first seizure came at three months. The seizures escalated rapidly. She was diagnosed with Dravet syndrome, a severe form of epilepsy caused by a genetic mutation affecting sodium ion channels in the brain. Dravet syndrome is resistant to most conventional anti-epileptic medications. By age five, Charlotte was experiencing more than 300 grand mal seizures per week. She was in a wheelchair. She had stopped speaking. Her parents signed a do-not-resuscitate order.

The family had exhausted conventional medicine. Charlotte had been prescribed every available anti-seizure medication, many with severe side effects. Nothing controlled the seizures. Her parents faced the reality that their daughter was dying — slowly, violently, hundreds of times per week.

The Stanley brothers and Hippie's Disappointment

The Stanley brothers — six brothers who operated cannabis grow operations in Colorado — had bred a high-CBD, low-THC strain that recreational users had no interest in. They called it "Hippie's Disappointment" because it did not produce a high. The strain had roughly 17 percent CBD and less than 1 percent THC.

Charlotte's mother, Paige Figi, contacted the Stanley brothers after researching CBD's potential anti-seizure properties. They were initially reluctant — Charlotte was five years old, and providing cannabis to a child carried enormous legal and ethical weight. But they agreed.

2012

First CBD dose

Charlotte receives her first dose of the Stanley brothers' high-CBD oil. The results are immediate and dramatic: seizures drop from more than 300 per week to two or three per month. Charlotte begins walking again. She begins speaking again.

Charlotte's Web

The Stanley brothers renamed their strain Charlotte's Web in her honor. The name would become the most famous cannabis cultivar brand in the world — not for getting people high, but for stopping a child's seizures.

CNN: Sanjay Gupta's "Weed"

August 11, 2013

CNN airs <em>Weed</em>

Dr. Sanjay Gupta's documentary Weed airs on CNN, featuring Charlotte Figi's story prominently. Gupta, who had previously opposed medical cannabis, reverses his position on camera. The documentary reaches tens of millions of viewers.

Charlotte Figi opened my eyes.
Dr. Sanjay Gupta, CNN, August 2013

Gupta's reversal was significant because of who he was — CNN's chief medical correspondent, a neurosurgeon, a mainstream medical authority. His public change of mind, driven by Charlotte's case, gave medical cannabis a credibility it had never had in mainstream media. The documentary reached an audience that cannabis activists had never been able to access.

Cannabis refugees

The documentary triggered a migration. More than 500 families with children suffering from severe epilepsy moved to Colorado to access Charlotte's Web and similar high-CBD products. They became known as "cannabis refugees" — families who uprooted their lives because the medicine that worked for their children was illegal in their home states. The phenomenon highlighted the absurdity of a patchwork system in which a medicine could be legal in one state and a felony in the neighboring state.

Realm of Caring and legislative impact

The Stanley brothers and the Figi family co-founded Realm of Caring, a nonprofit organization providing information and access to CBD products for patients with epilepsy and other conditions. Charlotte's story drove legislation at both the state and federal level:

Charlotte's Web CBD Oil Access Act — introduced in Congress to exempt high-CBD, low-THC cannabis from the Controlled Substances Act.
2018 Farm Bill — removed hemp (including CBD) from the CSA entirely, enabling nationwide access to CBD products.
FDA approval of Epidiolex (2018) — the first FDA-approved cannabis-derived medication, a purified CBD formulation for Dravet syndrome and Lennox-Gastaut syndrome. Charlotte's case was part of the evidentiary basis for approval.

Death

April 7, 2020

Dies at age 13

Charlotte Figi dies at age 13 in Colorado Springs. The cause is believed to be COVID-19, though her underlying condition made any respiratory illness potentially fatal. She was among the youngest known COVID fatalities in Colorado.

Colorado Governor Jared Polis proclaimed Charlotte Figi Day in her honor. The girl whose seizures had prompted her parents to sign a DNR at age five had lived eight more years — years in which she walked, spoke, and went to school — because of a cannabis strain that recreational users did not want.

Significance

Charlotte Figi's story is the most powerful patient narrative in cannabis history. It changed a CNN correspondent's mind on national television. It moved 500 families across state lines. It drove federal legislation and FDA approval. It demonstrated that cannabis-derived medicine could do something that all of conventional pharmacology could not — control a child's catastrophic seizures.

Her story also demonstrated the human cost of Schedule I classification. A child had to become a test case because the federal government classified her medicine as having "no currently accepted medical use." The medicine worked. The scheduling was wrong. Charlotte Figi proved it with her body.