florida family moves to colorado for cbd oil

Families See Colorado as New Frontier on Medical Marijuana

FOUNTAIN, Colo. — As their children cooed from wheelchairs and rocked softly in their arms, the marijuana migrants of Colorado clasped hands, bowed their heads and said a prayer of cautious thanks.

They thanked God for the dinner of roast turkey and mashed potatoes, for their children and for the marijuana-based serum that has drawn 100 families to Colorado on a desperate pilgrimage to quell the squalls of seizures inside their children’s heads. They have come from Florida and Virginia, South Carolina and New York, lining up to treat their children with a promising but largely untested oil that is considered legal medicine in this cannabis-friendly state.

“Thank you for bringing us together,” said Aaron Lightle, whose wife and 9-year-old daughter, Madeleine, moved here after the girl’s neurologists suggested removing part of her brain to stop her relentless seizures. “In crazy ways, maybe. But hey, we’re here.”

Their migration is one of myriad ways that a once-illicit drug is reshaping life here in Colorado, which now stands at the forefront of the national debate over legalizing drugs. While these families are seeking treatment through a medical marijuana system that has existed for years, they are arriving at a time when the drug is becoming a mainstream part of public life, made legal for recreational use in a historic vote last year.

The Justice Department has warily allowed Colorado and Washington State, which passed a similar measure, to go ahead with their plans to regulate recreational marijuana, even though it remains illegal under federal law. The first retail marijuana shops in Colorado are poised to open in January. Strains of sativa and indica plants flourish in basements across the state. This week, the Denver City Council moved toward allowing people to smoke marijuana on their property, though smoking in public would still be prohibited.

The new arrivals call themselves marijuana refugees. Many have left jobs and family members behind in states where marijuana remains outlawed, or cannot be used to treat children. While some have moved their entire families, others are splintered, paying rent and raising children in two states. During the holidays, they join family gatherings through video chats and swap iPhone pictures of Christmas trees.

But as more arrive to register their children as medical-marijuana patients, they have knitted together a random family here, across the suburbs and foothills of Colorado’s Front Range. They are Muslims and conservative Christians, liberal Democrats and conservative Republicans.

Now, they cook dinners and babysit for one another. They meet to compare progress and seizure diaries. They discuss the best ways to feed the oil to their children. They wait, and hope for results that mirror the astonishing successes they have seen in television reports and online videos.

“I put what fit in my car and drove out here,” said Marisa Kiser, whose 19-month-old son, Ezra, has had seizures since he was 3 days old.

The families have hung their hopes on a marijuana oil called Charlotte’s Web, which is made by a medical marijuana dispensary in Colorado Springs. The business, called Indispensary, also sells a variety of highly potent marijuana and edibles. Buyers of the medical marijuana must present certifications from two practicing Colorado doctors.

Charlotte’s Web is a rich amber and as thick as cold honey. It smells like marijuana and tastes like raw plants. Joel Stanley, one of five brothers who run the dispensary, says the oil is low in THC, which gets users high, but contains a wealth of a cannabidiol, or CBD, a chemical that provides no buzz, but that marijuana advocates and medical researchers say has a variety of medical uses.

A month’s supply of the oil can cost $150 to $250, and some families say they receive financial help from a nonprofit group related to the dispensary called the Realm of Caring Foundation. In a YouTube video produced by Realm of Caring, two mothers describe how their children were transformed after taking the oil for a few months. In one section, Paige Figi recalls how seizures had jolted her daughter Charlotte every 15 minutes, leaving the girl unable to walk or talk. In the next shot, the girl dances in a pink leotard and shouts, “Ballerina!”

The other mother featured in the video, Heather Jackson, was so convinced by the potential of CBD that she is now the executive director of the Realm of Caring Foundation.

Ms. Jackson said her son, Zaki, who once had 200 seizures a day, still faces a host of developmental disabilities, and will probably need help for the rest of his life. But she said he had gone 14 months without a seizure. A pretreatment recording of electrical activity in his brain showed a heaving chaos of huge spikes and deep troughs. A readout taken several months in showed smoother rises and falls.

“It’s really incredible,” Ms. Jackson said in an interview. “For whatever reason, this has put his syndrome into remission.”

There is only scattered medical research to substantiate the claims, in large part because marijuana’s outlaw status has kept it off limits for many scientists in the United States. Studies as far back as 1975 have suggested that cannabidiol can prevent spasms in lab animals, and a few researchers in the United States have conducted limited studies on people.

Dr. Margaret Gedde, a Colorado physician who has recommended medical marijuana to dozens of families with severely epileptic children, recently conducted a small survey that offered promising results. Of 11 families who treated their children with high-CBD oil, eight reported that their children’s seizures had fallen by 98 to 100 percent. The other families reported smaller but noticeable declines.

Dr. Gedde and her co-researcher, Dr. Edward H. Maa, an assistant professor of neurology at the University of Colorado School of Medicine, will present their research to the American Epilepsy Society at a meeting next week.

But the clinical trials matter little to parents who have watched their children sustain cracked skulls and broken arms during seizures, who have spent holidays in the emergency room, whose toddlers are taking barbiturates. After years of watching their children slowly vanish behind a firestorm of seizures, or the debilitating side effects of powerful prescription drugs, they said marijuana seemed worth a try. The families’ stories have been covered extensively in the local newspaper, The Gazette.

“We really didn’t have any other options,” said Annie Koozer, whose family left Tennessee in search of help for their 2-year-old daughter, Piper, who has a rare genetic condition called Aicardi syndrome, in which the structure that connects the two hemispheres of the brain is deformed or missing. Since she was 3 months old, the girl has endured 400 seizures a day.

After treatment by five neurologists and nine increasingly debilitating seizure medications, the family moved to Colorado in August. Ms. Koozer’s husband, Justin, called it the family’s last-ditch effort to help Piper. They signed a lease on an apartment and began giving her the oil about a month ago.

Waves of seizures still attack her, leaving her parents helpless, worried she will stop breathing. But they said Piper sleeps more, seems more alert and appears to have fewer spasms now — sometimes as few as two or three each day. They do not know what will happen, whether the progress is real or sustainable. But they have decided to keep at it. And they have decided that this place, 1,300 miles away from their extended family, is now home.

Charlotte Figi, the Colorado girl who inspired the CBD movement, dies following illness suspected to be coronavirus

Figi, 13, was the namesake for Charlotte’s Web products. Her story changed the way the public perceives marijuana.

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Charlotte Figi, the Colorado Springs girl who, as a gleeful and fragile child, launched a movement that led to sweeping changes in marijuana laws across the globe, has died from complications possibly related to the new coronavirus.

Charlotte’s death was announced by a family friend Tuesday night on the Facebook page of her mother, Paige Figi.

“Charlotte is no longer suffering. She is seizure-free forever. Thank you so much for all of your love,” read the post, which also asked the public to respect Figi’s family’s privacy.

Paige Figi had posted in recent weeks on Facebook about a serious illness that sickened all the members of her family with fever, coughing and breathing difficulties and sent Charlotte to the hospital.

In an update Wednesday to the Facebook post announcing Charlotte’s death, Paige Figi said the family did not initially meet the criteria for testing for COVID-19, the disease caused by the coronavirus, so they self-treated at home, as instructed. Charlotte’s symptoms worsened, and she was admitted to the hospital on April 3, where she was tested for COVID-19.

The test result came back negative — though the coronavirus test has been beset with false negatives. Figi wrote that Charlotte was treated on a floor designated for COVID-19 patients, “using all of the medical protocols set in place.”

She was discharged from the hospital on Sunday, after her condition seemed to improve. She suffered a seizure Tuesday morning resulting in respiratory failure and cardiac arrest, however, and she was taken back to the hospital, where she was treated “as a likely COVID-19 case.” Figi said seizures commonly occur along with illnesses in children like Charlotte with Dravet syndrome.

“Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully,” Paige Figi wrote.

Early Wednesday, the Realm of Caring Foundation, an organization co-founded by Paige Figi, wrote on Facebook that Charlotte’s death was due to complications from COVID-19. But the organization later amended the post to remove the reference to the coronavirus.

If her death is verified by public health officials as related to COVID-19, Charlotte would be the youngest victim of the pandemic in Colorado so far. A spokeswoman for El Paso County Public Health said Wednesday that the department cannot comment about individual cases. But she said the county, at least yet, does not have any confirmed pediatric deaths from COVID-19.

COVID-19 IN COLORADO

The latest from the coronavirus outbreak in Colorado:

  • MAP: Cases and deaths in Colorado. : Here’s where to find a community testing site. The state is now encouraging anyone with symptoms to get tested. : Get up-to-date information.

“Your work is done Charlotte, the world is changed, and you can now rest knowing that you leave the world a better place,” the Realm of Caring Foundation wrote on Instagram.

Dravet syndrome is a rare and debilitating form of epilepsy that first appears when children are young. From the time she was just 3 months old, Charlotte suffered hundreds of small and large seizures a day. Pharmaceutical treatments proved ineffective, and, by the age of 5, Charlotte struggled to walk and talk and required a feeding tube.

After hearing about a family in California that treated their child’s seizures with oil made from cannabis, Paige Figi began to research the possibility and soon connected with a Colorado Springs medical marijuana dispensary owner named Joel Stanley, who, along with his brothers, had helped developed a strain of cannabis rich in cannabidiol, or CBD, a non-psychoactive compound.

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Paige Figi said Charlotte’s seizures reduced dramatically when she began taking CBD oil, so much so that Paige weaned Charlotte off anti-epileptic pharmaceutical drugs. Charlotte soon was able to walk, play and feed herself. Her story was featured in academic literature. Last month, Paige posted on Facebook that it had been five years since Charlotte’s feeding tube was removed.

In her honor, the Stanley brothers named their CBD product Charlotte’s Web.

Charlotte’s story took on global significance, though, in 2013, when she appeared in a documentary by CNN’s Dr. Sanjay Gupta. The documentary showed Charlotte laughing and playing, her seizures quelled by CBD.

For families across the world whose children suffered from Dravet and similar conditions, the video clips were a revelation and a hope — and hundreds of families moved to Colorado seeking CBD for their children under the state’s medical marijuana laws. The migration was so large, families had a name for themselves: marijuana refugees.

Charlotte soon became a prominent face of the medical marijuana movement across the country and the world, and Paige Figi and the Stanley brothers became outspoken advocates for legalizing CBD. Laws to do that swept to victory in statehouses, even in conservative states.

Today, 47 states now have laws permitting CBD products in some form. Hemp is legal federally. Charlotte’s Web is one of the best-selling CBD products on the market, posting $95 million in revenue last year. And Charlotte’s story has been credited with softening opposition to broader marijuana legalization, as well.

“She was a light that lit the world. She was a little girl who carried us all on her small shoulders,” the Stanley brothers wrote in a tribute posted Tuesday night on the Charlotte’s Web website. “… What began as her story, became the shared story of hundreds of thousands, and the inspiration of many millions more in the journey of their betterment. Charlotte was and will be, the heartbeat of our passion, and the conviction that the dignity and health of a human being is their right.”

Charlotte, you are the light of our lives.

In loving memory of Charlotte Figi. Thank you for your life, your bravery and your beautiful soul. pic.twitter.com/x7JPFsXDQv

— Charlotte's Web (@charlottesweb) April 8, 2020

Condolences flooded Paige Figi’s Facebook page Tuesday night — a testament to the following Charlotte had gained over the years. Among those paying tribute to Charlotte online was the Epilepsy Foundation, which, after early hesitancy, came to embrace the therapeutic potential that CBD could hold for some children with epilepsy.

“Our deepest condolences go to the Figi family,” the foundation wrote on Twitter. “We encourage everyone to respect the family’s privacy at this very difficult time.”

Updated at 2:50 p.m. on Wednesday, April 8, 2020: This story and headline were updated to include new information provided by Charlotte Figi’s family about the medical circumstances surrounding her death.

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