Mom, 7-Year-Old Daughter Become Marijuana Refugees

Lindsey Seavert, KARE

CLINTON, Minn.-- Big Stone County, on Minnesota's farwestern edge, is home to not a single stoplight. Here, the Botker familyfarm is more lonesome than ever.

Mark and Maria Botker's quest togain medical marijuana to treat their daughter's epilepsy has forcedtheir family of five 800 miles apart. Next month, they will become frontand center of a controversial debate over whether to legalize medicalmarijuana in Minnesota.

Another Minnesota family from Brainerdmoved to Colorado this month to gain the same access for their daughter,and two more families are already planning the move.

Medicalmarijuana is legal in 20 U.S. states and the District of Columbia, butmomentum builds as six more states confront the issue again this year,including Minnesota. The issue faces emotional hurdles with both medicaland legal opposition. Already, Governor Mark Dayton has said he won'tsign off as long as law enforcement agencies are opposed.

TheBotkers said they didn't have the time to wait for roadblocks inMinnesota. So Mark Botker and his two oldest daughters live in Clintonon the family farm, while Maria and their youngest daughter Greta packedup a moving truck, and bought a new home south of Denver. They areamong hundreds of marijuana refugees moving to Colorado from all overthe country for a special strain of medical marijuana believed to helpchildren with epilepsy.

Greta Botker, 7, is known as "G" to everyone in Clinton, isrecognizable by her bewitching smile and loud squeals. First diagnosedwith infantile spasms at five months old, she's never been able to say aword.

Every seizure - up to fifteen a day - causes trauma to thebrain and slowly stunts her development. She walks unsteadily and cannotfeed herself.

The seizures continued to another diagnosis of Lennox-Gastaut syndromeis a severe form of epilepsy that usually appears before 4 years of ageand includes several different types of seizures. To date, fifteenprescriptions, special diets, even brain surgery haven't stopped its'relentless grip.

"If you would have asked me a year ago if I wouldhave had my daughter on marijuana I would have thought you were crazy. Imean, really?" said Maria Botker. "But when you have put your daughterthrough something as scary as brain surgery like we did with Greta aboutthree years ago, this seems like nothing, really nothing."

MariaBotker, 38, is a longtime nurse who measures the dose carefully. Themedical marijuana is an oil extract and comes in liquid form, whichGreta swallows in a gel capsule three times a day. She said after twomonths, seizures are now reduced to four to five a day.

"She went22 hours without a seizure, that's unheard of for her. Unheard of. Thismakes sense, it's a simple choice," said Botker.

The oil is now called Charlotte's Web and is grown in the panorama ofColorado Springs, where Jordan Stanley and his brothers run one of thelargest medical marijuana grows in the state. They bred a plant low inTHC, the compound that creates the marijuana high, and boosted anothercompound, called CBD.

"CBD is non-psychoactive, and isanti-inflammatory triggers neurological system," said Jordan Stanley."That's what industrial hemp is really. You'd have to smoke a joint thesize of a telephone pole to get high from it."

Today, their Realm of Caring non-profitfoundation provides cannabis oil to children with seizures at a lowcost. Realm of Caring opened up a national waiting list this month, andnearly families signed on in the first day. The organization receives upto 5,000 phone calls a month, and is scrambling to grow two newgreenhouses full of Charlotte's Web.

Charlotte's Web is namedafter Charlotte Figi, the first child to begin taking the cannabis oiltwo 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.

"Charlottehas Dravet Syndrome and she was end of life. We had failed everymedicine," 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 arereduced from 1,200 a month, to only a few each month. Just as sheexplained the progress, KARE 11 witnessed Charlotte have one of thoseseizures, convulsing severely in the middle of the greenhouses that growthe plant named after her.

As hard it is to watch, Figi explain the heartbreak of parents ofchildren with seizures, saying the cannabis isn't a cure but eases thecruelty.

"I'm concerned as a mother is the honeymoon over?Logically, no it's some sort of trigger like she's sick, these kids anyseizure can kill them she can die," said Figi. "That is what we aredealing with, that's what all these parents are coming here for."

Families call it the marijuana miracle, even when the nation's twoleading epilepsy organizations warn against it, arguing research and FDAapproval is needed.

"A year ago none of us thought this would be apotential miracle. And now everyone thinks it is. I think we finallyfound it. Think we did," said Maria Botker. "It's saving my daughter. AmI going to wait around and watch my daughter have 12-15 seizures a daybecause something is not FDA approved or something doesn't have thatkind of clearance or research backing it? Absolutely not," said Botker.

Sincetaking Charlotte's web, Maria Botker says daughter's reduced seizuresare shorter with faster recovery. After two months, Greta's now offseveral other prescriptions.

Other families following in similarpaths as the Botkers report the same progress. Anna and BiagioBurriesci, of New York City, moved to Colorado recently for their twoyear old daughter Grace, who has Dravet syndrome. They report her 300seizures a day are down by 60 percent.

"Ware at the forefront. Weare the pioneers. In ten years from now, everybody will look back on itand say, remember when all those families moved to Colorado and startedthis entire move?" said Anna Burriesci.

Rachael and Shawn Selmeskimoved to the Denver area for their daughter Maggie. At 20 months, herform of epilepsy is still mystifying doctors. Already, they say Maggieis more alert and responsive.

"She was really was just a shell of a body before this," said Rachael Selmeski.

The American Epilepsy Societysaid, "While there are some anecdotal reports of marijuana use intreating epilepsy, scientific evidence for the routine use of marijuanafor this indication is lacking. The lack of information does not meanthat marijuana is ineffective for epilepsy. It merely means that we donot know if marijuana is a safe and efficacious treatment for epilepsy."

The organization emphasized it is against federal law to possess or use marijuana.

"Inaddition, little is known about the long term effects of usingmarijuana in infants and children, and chronic exposure duringadolescence has been shown to have lasting negative effects on cognitionand mood. Such safety concerns coupled with a lack of evidence ofefficacy in controlled studies result in a risk/benefit ratio that doesnot 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 theconcerns in conjunction with the National Epilepsy Foundation,emphasizing research into medical marijuana and seizure control is notcomplete.

"It's gut wrenching to see these families, families wehave been working with for years, but more research has to be done. Sothe position is we need to do more research before we draw firmconclusions about the effectiveness of it. ," said Executive DirectorVicki Kopplin.

Kopplin said research is beginning with one Minnesota family isalready part of federal clinical trials underway at the NationalInstitute of Health.

"It's really a difficult position. Without the medical support, it won't move forward," said Kopplin.

A bill sponsoredby Rep. Carly Melin, DFL-Hibbing, and Sen. Scott Dibble,DFL-Minneapolis, would legalize medical marijuana for several conditionsunder a doctors' approval. Patients could possess up to 2.5 ounces ofmarijuana or grow up to a dozen marijuana plants of their own or buy theproduct from a dispensary.

Heather Azzi, policital director with Minnesotans for Compassionate Care,the organization leading the fight, said both bills have bipartisansupport and have the maximum number of co-authors allowed by law.

"Recentpolling shows that more than three-quarters (76%) of Minnesota voterssupport changing state law to allow people with serious and terminalillnesses to use medical marijuana," said Azzi.

Azzi said thehealth policy committee will discuss the measure soon after thelegislature reconvenes on February 25th. The bill will be heard byseveral committees before the House and Senate will be able to vote onit 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.

"Ifit'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 friendwho has written letters to lawmakers.

The fight also includes legal opposition. Every law enforcementassociation in Minnesota opposes legalization. John Kingrey, ExecutiveDirector of the Minnesota County Attorney Association said while the lawenforcement community is supportive and sympathetic to medical solutionand the suffering of families, but worries it could get into the wronghands.

"It's the genie in a bottle, and when you got plants floating around, it's going to get out," said Kingrey.

TheMinnesota Sheriffs' Association says in the states where there aremedical marijuana laws, research shows an increase in juveniles and highschool students that have accessed medical marijuana from theirparents, according to Executive Director Jim Franklin.

"There isprobably not a law enforcement officer who doesn't have a connection to amedical factor involving a friend, a child, a loved one. So we are verysympathetic," said Franklin. "I have suggested we are looking at thewrong level in the state of Minnesota. We should be looking at thefederal level of doing this for all states under some areas of medicalresearch and branching this out. If it's good in Minnesota, why is notgood 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 allthe kids who need this - not only kids but adults. I think there's agreat need for it."

Between Minnesota and Colorado stands a greatdivide. Stigma must be scaled. Until then, Greta continues her climb,and a part of Clinton is still missing.

"She just needs her familyaround 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'snot home. Not home. Never will be."


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