Pubdate: Sat, 19 Apr 2014
Source: Kansas City Star (MO)
Copyright: 2014 The Kansas City Star
Author: Donald Bradley


Otis Reed will soon move to Colorado so he can get marijuana every

No hurry. One night last week, he happily chomped on string cheese and
broccoli. Well, spit broccoli out anyway, the florets landing on the
toy frog in his lap.

Otis is 2. He and little ones like him have become the new face of
America's discussion about marijuana. Forget Bill Maher and Willie
Nelson for now - that's old weed thinking.

Now it's about kids who suffer hundreds of seizures every day because
of epilepsy and other neurological disorders. A growing number of
health professionals, buoyed by new research and positive results, say
medical marijuana, specifically an oil extract called Charlotte's Web,
can help those children.

The big question is, why do these families have to move to Colorado to
get it? Even the national Epilepsy Foundation says the treatment
should be available everywhere. It's made in Colorado Springs, but if
people bring it home to a non-medical marijuana state, such as Kansas
or Missouri, they could be arrested.

Margaret Gedde, a doctor in Colorado Springs, blames people clinging
to a decades-old resistance right out of "Reefer Madness." And until
change comes, families known as "medical marijuana refugees" are
streaming to Colorado.

"As success stories get out and word spreads, they are coming here
from everywhere," said Gedde, a pathologist who has encouraged dozens
of families to make the move from as far away as Florida.

"We see them every day."

That's what Otis' mom and dad are doing. Otis, who turns 3 in June,
can't walk or talk. In February, he broke a leg because constant
medication weakened his bones.

But he smiles. His life is what he knows.

Kathy and Ryan Reed have tried everything to help him. Various
doctors, different hospitals, ketogenic diet, two pages of drugs.
Nothing worked. Then they heard about Charlotte's Web. So the family
is leaving Baldwin City, Kan. - and jobs and family - in May for
Colorado Springs.

"Anybody in our shoes would do the same thing," Ryan Reed

Through the Internet and social media, the refugees find each other.
They exchange stories, compare notes and help with one another's kids.
A woman who moved last year from Gladstone with her daughter said she
has more than 400 families on a Facebook page.

It could soon be the faces of children such as Otis Reed and June
Jessee, a toddler in St. Louis, that legislators will see on large
video screens in chambers as laws are challenged in the 29 states that
do not allow medical marijuana.

And of course, Charlotte Figi, a little girl with a genetic disorder
called Dravet syndrome that causes catastrophic seizures. She was so
sick - her heart stopped twice - that her parents signed a "do not
resuscitate" order.

Then they tried the marijuana oil - and it worked. She is the
Charlotte of Charlotte's Web.

"Marijuana can end the suffering of children with seizures," Gedde
said by phone from her office. "Who wants to be against that?"

Critics argue that a medical marijuana law is just a steppingstone to
statutes allowing recreational use. They say that it would make pot
easier for teens to get and that it would lead to harder drugs. They
also point to all the approved drugs that are available.

The big "no" comes from the U.S. Food and Drug Administration, which
continues to say that marijuana "has a lack of accepted safety for use
under medical supervision" and that "no sound scientific studies
supported medical use of marijuana."

But the American Medical Association, along with other health
organizations, recently called for more research.

Proponents such as the refugee families want people to look at a
website called Face of Cannabis, at It
shows their children and tells their stories.

Ryan and Kathy Reed think medical marijuana will be legal everywhere
in a few years, but they can't wait. Otis needs help now, said Kathy
Reed, who works at the University of Kansas.

"It's just unfortunate that we have to pack up and leave our lives to
go get medicine that may save my son's life," she said.

These marijuana refugees don't rival in numbers the dream chasers of
the California gold rush or the downtrodden who migrated west during
the Great Depression.

But they have one thing those earlier seekers lacked. Or, rather, they
lack something the earlier ones possessed.

"We don't have a choice," said Matt Jessee, whose 2-year-old daughter,
June, suffers daily seizures from epilepsy. "Really, what else can you
do when it's your child? If you think it could help, don't you have to

He is wrapping up law school and works for the Bryan Cave legal firm
in St. Louis. His wife, Genny, recently testified before a Missouri
House committee considering medical marijuana.

Matt Jessee blames federal drug policy that continues to categorize
marijuana as a Schedule 1 drug, which means it has no accepted medical

He rejects criticism that asks, why try medical marijuana when we
don't know whether it will work? He said his family didn't know
whether the other medications would work either, and they didn't. One,
he said, had a 3 percent chance of working, and a possible side effect
was death.

"We can't wait any longer," he said of the family's move to Denver.
"Sure, it's a tough move. All our family is here, and we don't know
anybody out there. But every day June has seizures delays her
development, so we can't wait any longer.

"This is about hope."

Philip M. Gattone, president and chief executive officer of the
national Epilepsy Foundation, along with board chairman Warren
Lammert, said parents need to have the legal option to get medical
marijuana for their children.

The current situation is not acceptable, they said.

"Families looking to access medical marijuana as a treatment are
facing terrible decisions," Gattone said. "One parent may move across
the country to live with a child to seek this treatment. Other
families may uproot entirely, including leaving their job, to move
where they can access CBD oil," referring to Charlotte's Web.

The thick, amber-colored oil is made by a dispensary in Colorado
Springs. The process renders the oil high in cannabidiol, or CBD, a
chemical in cannabis thought to have medicinal properties, but removes
most of the tetrahydrocannabinol, or THC, the psychoactive part of pot
that gets users high.

The treatment, sometimes administered by a drop under the tongue, is
not covered by insurance, but financial help is available. A typical
month's supply runs about $300.

Orrin Devinsky, a professor of neurology at New York University and
director of the school's Comprehensive Epilepsy Center, said he
supports the treatment and the country's overall momentum toward
medical marijuana.

"If I were Charlotte Figi's parents and lived in Colorado, I would
have done exactly what they did," Devinsky says on the Epilepsy
Foundation's website. "And as a doctor, I would gladly prescribe
marijuana products for many of my patients who failed existing
therapies if it were legal in my state."

Jim Guthrie of Lawrence wishes Charlotte's Web would have come along
when his daughter was younger. Julia is now 20. He remembers when her
school wouldn't let her attend class unless she was in a wheelchair
and wearing a helmet.

"All the seizures - it was hell," Guthrie said. "Watching your
daughter be tortured and being helpless to stop it.

"These families moving to Colorado - they know the hell I mean.
They're desperate for something to help their kids. I would go in a

"I want to be clear on that: I would break the law. When it's your
child, it's a no-brainer."

Holly Brown and her daughter, Sydney, moved from Gladstone to Colorado
a year ago. Her story is like the others' - they tried everything, but
nothing worked.

She said Sydney, 10, has shown remarkable improvement with the

"I've seen incredible things," Brown said. "And not just with Sydney,
but others I've gotten to know out here. Kids sitting up the first
time, holding up their heads, saying their first words.

"Most of us just wanted help with seizures. But we're seeing
improvement with cognitive skills and memory."

Legislation has been introduced in Missouri and Kansas. Proponents in
Missouri think voters could see a ballot referendum perhaps within a
couple of years. Polling, they say, shows widespread and growing
support. Democrats and Republicans in the General Assembly have spoken
in favor.

Genny Jessee, June's mom, doesn't understand why it hasn't happened
yet and why a Missouri family must move to get help for a child.

"We've been through so much, and this is just something else we have
to do," she said. "Just like others, our support system is here. Our
family is here. June's therapists are here. So from that standpoint,
it's very hard. But thankfully, Matt's firm has an office in Denver,
so financially we can afford it.

"But some people can't, and that's not right."

Otis likes to swing outside. Likes the sun and the

Lots of both of those things are at his grandparents' place in a rural
area of Baldwin City. The family moved there when Ryan Reed quit his
teaching job so he could take Otis to doctor appointments and therapy

Kathy Reed needed to keep her job at KU for the family's health

Ryan's parents, Donna and David Reed, are glad to have them. They like
to hear Otis giggle as he rolls on the living room floor. He's their
only grandchild.

"They've been through so much and tried so many things," Donna Reed
said one evening last week in the kitchen.

She and her husband fully support the move to Colorado.

"You'll do anything for your kids," said David Reed, who works at
Baker University. "That's just how it is."

Ryan Reed will go out soon to find a place to live. At first, the plan
called for his wife to stay here and work, but KU is now offering to
let her telecommute for her job.

Ryan Reed said it's easier knowing they are not alone.

"Those of us doing this are learning from each other," he

His parents are already making plans to visit. Donna Reed said there
might even be a move in their future, too.

David Reed nodded. Yes, he would go along. He looked toward his

"It's looking like it's that or me staying here by myself."
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MAP posted-by: Matt