Pubdate: Fri, 06 Dec 2013
Source: New York Times (NY)
Copyright: 2013 The New York Times Company
Author: Jack Healy


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."

Amen, they said.

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.
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MAP posted-by: Jay Bergstrom