KANSAS CITY, Mo. - Families in the Kansas City Metro area are moving to Colorado to save their children. They're traveling for Charlotte's Web-- an oil derived from a special strain of cannabis.
For hundreds of families, it's considered a miracle cure to reduce seizures in their children with intractable epilepsy, a seizure disorder in which a patient fails to respond to treatment.
States across the country are beginning to turn green, either legalizing medical marijuana or like the Missouri legislature, passing legislation to legalize cannabis oil and giving families an opportunity to figure out if it can work for their children.
Many families have been on wait-lists for months to get Charlotte's Web and with Kansas still in the dark about legalizing cannabis oil, Ryan and Kathy Reed of Baldwin City, Kan., hopped at the first opportunity to move to Colorado to help their son Otis.
The Reeds moved to Colorado the first week in May to start treatment for their 3-year-old son who suffers from about 100 seizures per day.
"We've tried everything and there was never any sort of reduction in seizures," Kathy Reed said.
The story is similar for other local families including Holli Brown and her 10-year-old daughter Sydni Yunek of Gladstone, Mo.
"Sydni missed out on over half of her childhood having seizures. She used to have 125 seizures an hour which is around 3,000 a day," Brown said.
She and her daughter moved to Colorado less than a year ago to start treatment using Charlotte's Web. The cannabis oil delivered dramatic results for her daughter.
"She's had a couple of occasions where she actually went a week without any visible seizures, and that's incredible," Brown said.
Brown and her daughter, as well as the Reeds have joined more than 100 families that have moved to colorful Colorado for cannabis. These families are known as "Marijuana Refugees" and are tucked away in the mountains in a place where marijuana isn't getting their children high-- it's saving their lives.
Families are not only reporting a reduction in seizures, but say their children are more alert, more engaged and happy. Charlotte's Web families also say the oil doesn't have the devastating side effects of some of the FDA approved drugs and treatments.
The story of Charlotte's Web begins with a bright-eyed little girl named Charlotte and her parents Paige and Matt Figi. The Figis are the pioneers of the fight for cannabis oil to treat epilepsy in the U.S. and are the driving force behind the Realm of Caring organization, the non-profit that sells Charlotte's Web oil to families.
"We were the first," Paige Figi said. "Charlotte was the first kid in the state and it was lonely. We had nothing else to try and she was going to die."
About two and half years ago, the Figis found out that a group of medical marijuana growers, the Stanley brothers, were breeding a special strain of cannabis that is low in THC, the psychoactive ingredient known to get people high. Charlotte's Web, however, is a plant rich in CBD or Cannabidiol, a unique component that is known to have a calming effect on the brain.
Paige Figi envisioned that this strain of cannabis could be the cure for her daughter. The Stanley brothers agreed to create the oil for Charlotte and it's worked.
"We created this new seizure drug," Pagie Figi said. "This is a new medicine, but we're coming at it in a different way than a pharmaceutical model."
Charlotte's Web is organically grown in a greenhouse in an undisclosed area in Colorado. It takes about six months to grow the strain and then turn it into oil.
"We take the dried plant and soak it in alcohol and then we strain all the plant material out," Jesse Stanley said.
Stanley is responsible for creating the oil and spends most of the day in a lab testing the green solution to make sure it is consistent and free of contaminants. The oil is bottled and sold for 5 cents per milligram through the Real of Caring.
The Stanleys do not make a profit from Charlotte's Web; they sell other strains of medical marijuana to support the costs associated with growing and producing the oil.
"I'm invested, we're invested. My brothers are invested in these families. We want to see them get better. I don't look at any of them as a cash cow," Stanley said.
More than 6,000 families are on the Realm of Caring's waitlist to get Charlotte's Web. Once they get to Colorado, they are guaranteed a lifetime supply of the oil.
"We'd rather have a wait-list, as horrible as that is, than have a patient run out of medicine, they cannot run out of medicine," Paige Figi said, who sits on the board of the Realm of Caring organization.
But some doctors in Colorado question if the term "medicine" is appropriate for the cannabis oil. Dr. Amy Brooks-Kayal is the Chief of Pediatric Neurology for the School of Medicine at the University of Colorado.
"It is not a medication per se. The products are artisanal. The products aren't consistent
in their properties. The people that are currently dispensing this or recommending this are not neurologists, they're not epilepsy specialists, they're not even pediatricians,” she said.
Dr. Brooks-Kayal says her office has seen about 50 children in Colorado using Charlotte's Web or some kind of cannabis oil. About 25 percent have had an actual reduction in seizures, she said.
"We have essentially no information in children whether any marijuana derivative is an effective treatment for seizures and we have absolutely no information about safety for children, either short-term or long-term," Dr. Brooks-Kayal said.
But the growers don't claim to be experts in epilepsy. Five years ago the Stanleys left the oil business in Texas to explore how medical marijuana could help people suffering from a variety of ailments. For the most part, the brothers are self-taught and figured out how to create the oil on the Internet.
"My goal is not for everyone to move to Colorado," Jesse Stanley said. "We're not saying this is the answer for everyone but it is a solution for a lot of people. The long-term effects I don't know but we do know that it is stopping seizures just anecdotally if you see the kids and see their faces and the change, you can't deny it."
The stories of success and happiness have traveled across state lines and around the country to those who can't wait for legislation in their home states. It's bringing families to Colorado to give their children a chance to enjoy a childhood with fewer seizures.
"With the things that I've seen on Cannabis, I truly believe that it's possible for my daughter to make a comeback," Holli Brown said.
Jenna Hanchard will have the full story tonight on 41 Action News @ 10.