CLINTON, Minn. -- Big Stone County, on Minnesota's far western edge, is home to not a single stoplight. Here, the Botker family farm is more lonesome than ever.
Mark and Maria Botker's quest to gain medical marijuana to treat their daughter's epilepsy has forced their family of five 800 miles apart. Next month, they will become front and center of a controversial debate over whether to legalize medical marijuana in Minnesota.
Another Minnesota family from Brainerd moved to Colorado this month to gain the same access for their daughter, and two more families are already planning the move.
Medical marijuana is legal in 20 U.S. states and the District of Columbia, but momentum builds as six more states confront the issue again this year, including Minnesota. The issue faces emotional hurdles with both medical and legal opposition. Already, Governor Mark Dayton has said he won't sign off as long as law enforcement agencies are opposed.
The Botkers said they didn't have the time to wait for roadblocks in Minnesota. So Mark Botker and his two oldest daughters live in Clinton on the family farm, while Maria and their youngest daughter Greta packed up a moving truck, and bought a new home south of Denver. They are among hundreds of marijuana refugees moving to Colorado from all over the country for a special strain of medical marijuana believed to help children with epilepsy.
MEET GRETA BOTKER
Greta Botker, 7, is known as "G" to everyone in Clinton, is recognizable by her bewitching smile and loud squeals. First diagnosed with infantile spasms at five months old, she's never been able to say a word.
Every seizure - up to fifteen a day - causes trauma to the brain and slowly stunts her development. She walks unsteadily and cannot feed herself.
The seizures continued to another diagnosis of Lennox-Gastaut syndrome is a severe form of epilepsy that usually appears before 4 years of age and includes several different types of seizures. To date, fifteen prescriptions, special diets, even brain surgery haven't stopped its' relentless grip.
"If you would have asked me a year ago if I would have had my daughter on marijuana I would have thought you were crazy. I mean, really?" said Maria Botker. "But when you have put your daughter through something as scary as brain surgery like we did with Greta about three years ago, this seems like nothing, really nothing."
Maria Botker, 38, is a longtime nurse who measures the dose carefully. The medical marijuana is an oil extract and comes in liquid form, which Greta swallows in a gel capsule three times a day. She said after two months, seizures are now reduced to four to five a day.
"She went 22 hours without a seizure, that's unheard of for her. Unheard of. This makes sense, it's a simple choice," said Botker.
The oil is now called Charlotte's Web and is grown in the panorama of Colorado Springs, where Jordan Stanley and his brothers run one of the largest medical marijuana grows in the state. They bred a plant low in THC, the compound that creates the marijuana high, and boosted another compound, called CBD.
"CBD is non-psychoactive, and is anti-inflammatory triggers neurological system," said Jordan Stanley. "That's what industrial hemp is really. You'd have to smoke a joint the size of a telephone pole to get high from it."
Today, their Realm of Caring non-profit foundation provides cannabis oil to children with seizures at a low cost. Realm of Caring opened up a national waiting list this month, and nearly families signed on in the first day. The organization receives up to 5,000 phone calls a month, and is scrambling to grow two new greenhouses full of Charlotte's Web.
Charlotte's Web is named after Charlotte Figi, the first child to begin taking the cannabis oil two years ago. Her mother Paige had no options left for her daughter, she asked the Stanley Brothers to continue breeding a plant low in CBD.
"Charlotte has Dravet Syndrome and she was end of life. We had failed every medicine," said Paige Figi, her mother. "We are two years into this, she's off all her pharmaceuticals. She doesn't use her feeding tube, doesn't use her wheelchair."
Figi said her daughter's seizures are reduced from 1,200 a month, to only a few each month. Just as she explained the progress, KARE 11 witnessed Charlotte have one of those seizures, convulsing severely in the middle of the greenhouses that grow the plant named after her.
As hard it is to watch, Figi explain the heartbreak of parents of children with seizures, saying the cannabis isn't a cure but eases the cruelty.
"I'm concerned as a mother is the honeymoon over? Logically, no it's some sort of trigger like she's sick, these kids any seizure can kill them she can die," said Figi. "That is what we are dealing with, that's what all these parents are coming here for."
Families call it the marijuana miracle, even when the nation's two leading epilepsy organizations warn against it, arguing research and FDA approval is needed.
"A year ago none of us thought this would be a potential miracle. And now everyone thinks it is. I think we finally found it. Think we did," said Maria Botker. "It's saving my daughter. Am I going to wait around and watch my daughter have 12-15 seizures a day because something is not FDA approved or something doesn't have that kind of clearance or research backing it? Absolutely not," said Botker.
Since taking Charlotte's web, Maria Botker says daughter's reduced seizures are shorter with faster recovery. After two months, Greta's now off several other prescriptions.
Other families following in similar paths as the Botkers report the same progress. Anna and Biagio Burriesci, of New York City, moved to Colorado recently for their two year old daughter Grace, who has Dravet syndrome. They report her 300 seizures a day are down by 60 percent.
"Ware at the forefront. We are the pioneers. In ten years from now, everybody will look back on it and say, remember when all those families moved to Colorado and started this entire move?" said Anna Burriesci.
Rachael and Shawn Selmeski moved to the Denver area for their daughter Maggie. At 20 months, her form of epilepsy is still mystifying doctors. Already, they say Maggie is more alert and responsive.
"She was really was just a shell of a body before this," said Rachael Selmeski.
The American Epilepsy Society said, "While there are some anecdotal reports of marijuana use in treating epilepsy, scientific evidence for the routine use of marijuana for this indication is lacking. The lack of information does not mean that marijuana is ineffective for epilepsy. It merely means that we do not know if marijuana is a safe and efficacious treatment for epilepsy."
The organization emphasized it is against federal law to possess or use marijuana.
"In addition, little is known about the long term effects of using marijuana in infants and children, and chronic exposure during adolescence has been shown to have lasting negative effects on cognition and mood. Such safety concerns coupled with a lack of evidence of efficacy in controlled studies result in a risk/benefit ratio that does not support use of marijuana for treatment of seizures at this time."
The Epilepsy Foundation of Minnesota, which advocates for people struggling with epilepsy, also joined in the concerns in conjunction with the National Epilepsy Foundation, emphasizing research into medical marijuana and seizure control is not complete.
"It's gut wrenching to see these families, families we have been working with for years, but more research has to be done. So the position is we need to do more research before we draw firm conclusions about the effectiveness of it. ," said Executive Director Vicki Kopplin.
Kopplin said research is beginning with one Minnesota family is already part of federal clinical trials underway at the National Institute of Health.
"It's really a difficult position. Without the medical support, it won't move forward," said Kopplin.
FIGHT TO LEGALIZE IN MINNESOTA
A bill sponsored by Rep. Carly Melin, DFL-Hibbing, and Sen. Scott Dibble, DFL-Minneapolis, would legalize medical marijuana for several conditions under a doctors' approval. Patients could possess up to 2.5 ounces of marijuana or grow up to a dozen marijuana plants of their own or buy the product from a dispensary.
Heather Azzi, policital director with Minnesotans for Compassionate Care, the organization leading the fight, said both bills have bipartisan support and have the maximum number of co-authors allowed by law.
"Recent polling shows that more than three-quarters (76%) of Minnesota voters support changing state law to allow people with serious and terminal illnesses to use medical marijuana," said Azzi.
Azzi said the health policy committee will discuss the measure soon after the legislature reconvenes on February 25th. The bill will be heard by several committees before the House and Senate will be able to vote on it and then present it to Governor Dayton for his signature or veto.
People in Clinton ask lawmakers consider Greta, who turned once skeptical town liberal with their love.
"If it's helping this little girl be healthy, why can't she come home? That's what's hard to understand," said Janine Teske, a family friend who has written letters to lawmakers.
The fight also includes legal opposition. Every law enforcement association in Minnesota opposes legalization. John Kingrey, Executive Director of the Minnesota County Attorney Association said while the law enforcement community is supportive and sympathetic to medical solution and the suffering of families, but worries it could get into the wrong hands.
"It's the genie in a bottle, and when you got plants floating around, it's going to get out," said Kingrey.
The Minnesota Sheriffs' Association says in the states where there are medical marijuana laws, research shows an increase in juveniles and high school students that have accessed medical marijuana from their parents, according to Executive Director Jim Franklin.
"There is probably not a law enforcement officer who doesn't have a connection to a medical factor involving a friend, a child, a loved one. So we are very sympathetic," said Franklin. "I have suggested we are looking at the wrong level in the state of Minnesota. We should be looking at the federal level of doing this for all states under some areas of medical research and branching this out. If it's good in Minnesota, why is not good in the rest of the country?"
Mark Botker hopes opponents will see otherwise.
"Someday I'd like to help grow medical marijuana and help supply all the kids who need this – not only kids but adults. I think there's a great need for it."
Between Minnesota and Colorado stands a great divide. Stigma must be scaled. Until then, Greta continues her climb, and a part of Clinton is still missing.
"She just needs her family around her. They are her joy. And she is theirs," said Maria Botker. "It's beautiful out here. I love it from what it's providing us. It's not home. Not home. Never will be."