Pubdate: Tue, 18 Feb 2014
Source: USA Today (US)
Copyright: 2014 USA TODAY, a division of Gannett Co. Inc
Contact: http://mapinc.org/url/625HdBMl
Website: http://www.usatoday.com/printedition/news/index.htm
Details: http://www.mapinc.org/media/466
Author: Marisol Bello
Page: 1A

FAMILIES MOVE TO COLORADO FOR 'MIRACLE' POT

Greta Botker has been through more adversity in her short life than
most adults. At the age of 7, she's sampled a host of medications for
her epilepsy: Onfi, Depakote, Felbatol, Keppra and Prednisone. She's
been on strict diets. She's had brain surgery. Nothing reduced the 15
or so seizures she had every day since she was 5 months old that kept
her from walking steadily, feeding herself or talking. Her parents,
Maria and Mark, had run out of options.

Then they heard about a strain of marijuana grown in Colorado that
reduced the number of seizures in children with severe epilepsy.

"We really tried everything with Greta," says Maria Botker, a nurse.
"We put our child through brain surgery, so a plant like marijuana was
not going to scare me."

In November, Maria and Greta headed west to find a miracle. Mark and
the couple's two other daughters, 13 and 10, stayed on the family's
farm in Minnesota.

Maria and Greta joined a migration of parents who, after trying
countless methods to ease their children's crippling seizures, are
packing up their families and moving to Colorado.

The state has become a refuge for those families for two reasons:
Colorado has the most liberal laws for use of marijuana, and it has
opened a market for a strain called Charlotte's Web that is believed
to be effective for people with severe epilepsy.

At the beginning of the year, Colorado became the first state to allow
recreational marijuana use for adults. It has permitted medical
marijuana since 2000.

Realm of Caring, a Colorado foundation started by the family that
grows Charlotte's Web, has 100 patients whose families have moved to
Colorado from 43 states and two countries, says executive director
Heather Jackson. It has a waiting list of more than 2,000 people, she
says. In all, the foundation has more than 300 medical marijuana
patients, 200 of them children, Jackson says.

It's the latest development in a movement that began in 1996, when
California became the first state to legalize medical marijuana, says
Allen St. Pierre, executive director of the National Organization for
the Reform of Marijuana Laws, a pro-marijuana group. Since then, he
says, NORML has fielded thousands of calls from people who want to
move to states with medical marijuana.

"Our advice is ... if you can do it, literally get on a plane and fly
west," he says.

Many of the Colorado newcomers have settled along I25 between Denver
and Colorado Springs, where Charlotte's Web is grown. The strain is
high in cannabidiol, an ingredient in marijuana considered to have
medical applications, and low in tetrahydrocannabinol, or THC, which
gets people high. The strain is taken in liquid form, not smoked.

Charlotte's Web is named after Charlotte Figi, the first child to try
the strain two years ago. Charlotte, who was 5 at the time, suffered
60 seizures a day. Now, her parents say, she has none.

Cannabidiol is believed to act as a brake on parts of the brain that
cause epileptic seizures and as a stimulant in other parts that help
reduce them, says Igor Grant, director of the University of
California's Center for Medicinal Cannabis Research.

The science behind it remains unproven, so the Botkers are relocating
on a gamble.

The Epilepsy Foundation and the American Epilepsy Society do not
expressly tell families not to use medical marijuana, but they warn
there is not enough research to show whether it is safe and effective.
They urge patients to work with a doctor to determine the best treatment.

Sharon Levy, a pediatrician who directs the Adolescent Substance Abuse
Program at Boston Children's Hospital, warns against using marijuana
for any purpose. She says it has been proved to have negative
long-term effects on children, such as impaired brain function and
addiction. Though cannabidiol has shown some success in suppressing
seizures, she says, there is no research to guide parents on dosages
or long-term effects. "Marijuana is not a medicine," she says.

Joel Stanley, one of six brothers who grow Charlotte's Web, says 85%
of those taking it have seen fewer seizures. A handful have seen them
end. In 2012, Jackson's son Zaki, 10, was the second child to use
Charlotte's Web. Jackson says he's gone almost two years without a
seizure.

The successes are anecdotal, but Stanley says the foundation is
working with researchers to document the drug 's effectiveness.

Families say the unknown is worth the risk. The alternative, they say,
is their child's death.

The Botkers wasted no time getting to Colorado. They bought a house.
Maria obtained a Colorado driver's license. Following state
requirements, they took Greta to two doctors who signed off on medical
marijuana for her and got on Realm of Caring 's waiting list. By
November, they had settled just south of Denver.

It is the latest chapter in an odyssey that began when Greta was 5
months old and her mother noticed the first seizures. The couple took
her to specialist after specialist until one diagnosed her with
infantile spasms, which evolved into a rare genetic disease called
Lennox Gastaut syndrome, a severe form of epilepsy. The doctor told
them Greta would have developmental delays, difficulty with basic
functions such as walking and feeding herself, and extreme seizures
that would be hard to control.

An array of medications didn't cut the number of seizures. When she
was almost 5, Greta had brain surgery. It didn't work.

When they heard about Charlotte's Web on CNN, the Botkers saw it as a
lifeline.

Leaving the tightknit western Minnesota community of Clinton and
splitting up the family was something they had to do, Maria Botker
says. She telecommutes for her job as an administrative nurse at a
Minnesota hospital. Greta, who has the developmental capacity of a
2-year-old, goes to first grade. Mark and the older girls visited
during the holidays. The parents switch off every few months, so each
can spend time with all their daughters.

"We are a close family, and we love our community," Botker says, "so
being away has been really hard." But they've formed another community
with families who are also grasping for hope.

Anna and Biagio Burriesci live four blocks from the Botkers with their
6- and 4-year-old sons and 2-year-old daughter, Grace. In November,
the family moved to Colorado from New York City, where they grew up,
to find help for their daughter.

Grace is a friendly toddler with a sweet smile and curly black hair.
Like Greta, she was born healthy. She began having seizures when she
was a year old, her father says - as many as 300 a day.

"She'd be walking and just drop to the floor," Biagio Burriesci says.
She was diagnosed with Dravet syndrome, a rare condition with seizures
that are difficult to control, cause physical and cognitive delays and
can lead to death.

When the family learned on Facebook about a family moving to Colorado
last summer, "hoping for a miracle," Burriesci, a former paramedic,
says they began researching.

"This condition ultimately meant death for our kid, so we were going
to war for her," he says. "Families are desperate."

By the end of the summer, Grace was on Realm of Caring 's waiting list
for the drug.

The family sold their house in Queens, losing about $200,000,
Burriesci says. He left his job as a New York City police officer and
hasn't been able to find work in Colorado.

"We gave up everything," he says. Anna, an emergency room nurse, found
work in a hospital. He stays home with the children.

The sacrifice pales in the face of the upside, Burriesci says. Gracie,
as she's known to her family, receives 0.7 milliliters of liquid
marijuana three times a day. Her seizures are down to five a day, her
father says. She is walking better and learning to speak.

"We feel like we found our miracle," Burriesci says.

For the Botkers, hope costs $600 a month, which is not covered by
insurance. It is worth it, Maria Botker says. Greta is down to four to
six seizures a day.

Botker is fighting to get medical marijuana approved in Minnesota.
Then she and Greta could go home.
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MAP posted-by: Matt