Charlotte Figi, Who Helped Popularize CBD for Medical Use, Dies at 13

Charlotte Figi, whose use of cannabidiol, or CBD, to treat her epilepsy helped popularize its medicinal use, died on Tuesday. She was 13.

Her death was confirmed by her parents, Paige and Steven Figi, who said the cause was most likely complications related to Covid-19, the disease caused by the new coronavirus.

Charlotte became the face of the medicinal CBD movement when she was 5 years old, after it appeared that taking CBD eased the symptoms of her epilepsy.

She had her first seizure when she was 3 months old. Soon after, her parents were told that she had Dravet syndrome, a rare form of epilepsy that starts in infancy.

By age 5, Charlotte was having over 300 seizures a week, about one every 30 minutes, Ms. Figi said. Charlotte was in a wheelchair and used a feeding tube because she could not swallow, her mother said. On several occasions, she was resuscitated after her heart stopped.

The family tried dozens of medications but they did not work. “We were told by the doctor there was nothing left to try pharmaceutically,” Ms. Figi said.

Ms. Figi began to research CBD, a nonintoxicating, nonpsychotropic compound found in cannabis. The cannabinoid was being used overseas to treat epileptic patients. She found a grower who agreed to grow the hemp needed to extract CBD oil for Charlotte.

“I didn’t think it was going to work,” Ms. Figi said.

But it did. Charlotte did not have any seizures for seven days after starting the treatment, Ms. Figi said.

“She started talking, making eye contact, walking, and we removed her feeding tube,” her mother said. The seizures were reduced to about one a month.

Dr. Sanjay Gupta, the chief medical correspondent on CNN, interviewed Charlotte for his 2013 documentary special “Weed,” and later advocated the use of CBD to treat epilepsy.

Charlotte’s story made national headlines, and soon other epileptic patients followed her lead. Many saw similar results, Ms. Figi said.

In 2011, Charlotte’s Web CBD was founded by Joel Stanley, the hemp grower who helped Charlotte. The company was named after her.

“What began as her story, became the shared story of hundreds of thousands,” Mr. Stanley wrote on the company’s Facebook page. “Her story built communities, her need built hope, and her legacy will continue to build harmony.”

In 2018, the Food and Drug Administration approved a cannabidiol medication, Epidolex, to treat the seizures caused by Dravet syndrome. It was the first drug to be approved by the F.D.A. for the condition.

Ms. Figi said the members of her family experienced an illness in early March that she believes was Covid-19, but they did not meet the requirements to be tested.

“I’ve never been that sick in my entire life,” Ms. Figi said on Thursday. “We are a very healthy family.”

While the rest of the family was recuperating, Charlotte’s condition worsened and she was taken to Children’s Hospital in Colorado Springs on April 3, her mother said. Charlotte tested negative for the virus and was discharged two days later.

On Monday, Ms. Figi said, Charlotte was feeling better. She painted Charlotte’s toenails and they sat in the sun for a while. But early Tuesday morning, Charlotte had a seizure and became nonresponsive, her mother said.

“It was the last moment she was alive, I feel,” she said.

Charlotte was resuscitated by paramedics and rushed to the hospital. She had a seizure that led to her going into cardiac arrest, her mother said.

Ms. Figi said that Charlotte’s test for the coronavirus came a month too late. (False negatives are a known problem with the current coronavirus tests.)

In addition to her parents, Charlotte is survived by her twin sister, Chase; her brother, Maxwell, 16; and her mother’s husband, Greg Iafeliece.

For nine years, thanks to CBD, Charlotte had the opportunity to live a life with a close resemblance to that of any young girl, her mother said.

Charlotte was adventurous. She liked to hike and ride on the front of a tandem bike with her mother, and she enjoyed riding horses with her sister. But what was most important, Ms. Figi said, is that Charlotte was oblivious to the movement she started.

“She found incredible resolution from cannabis but she didn’t know,” Ms. Figi said. “She had a good life.”