Pubdate: Sun, 20 Oct 2013
Source: Oklahoman, The (OK)
Copyright: 2013 The Oklahoma Publishing Co.
Author: Dave Phillips, The Gazette (Colorado Springs) Page: 15A


Families of Epileptic Kids Become 'Marijuana Refugees' Seeking Cure in

COLORADO SPRINGS - When Mohammad Halabi was a boy, his parents fled
war in Lebanon to give their child a chance at life. Earlier this
month, as Halabi drove to Denver International Airport to pick up his
wife and 2-year-old daughter, he realized he was doing the same thing.

Halabi's daughter, Mia, has severe epilepsy. Treatment by some of the
country's best neurologists and most powerful drugs has done little.
This year, doctors told him to prepare for her death.

"No matter what we did, nothing helped. She just got worse until she
was almost a vegetable," he said. "She had no chance at life."

Then in July, he and his wife saw an online video of a Colorado
Springs girl's astounding recovery from epilepsy using an oil made
from a special strain of marijuana. The girl, who had been catatonic,
was now laughing and dancing in a ballerina outfit.

The Halabis live in New York City, where medical marijuana is

"As soon as we saw it, we knew we had to go," he said.

Families of children with severe epilepsy are moving to Colorado from
all over the country to get the oil that appears to have worked
medical miracles. They are splitting up families and leaving behind
careers to try a new treatment that strict federal drug laws have
prevented from being rigorously studied or tested. They hope success
here will push their states and the federal government to change
marijuana laws.

A common thread

In the meantime, they are leaving big cities and quiet farmland, blue
states and the Bible Belt, and heading to the Rockies. They are rich
and poor, Muslims like the Halabis and conservative Christians like
their new nextdoor neighbors, who just moved with their epileptic
daughter from Virginia. The one common thread is hope that marijuana
can save their children.

Many feel forced to leave their homes by laws that keep them from
getting an oil that could save a child's life. They call themselves
marijuana refugees.

"These families are really desperate," said Dr. Margaret Gedde, a
Stanford-educated Colorado Springs pathologist who has recommended
many of the arriving children for medical marijuana. "They've tried
all the drugs, and nothing has worked. This is the only option left."

At least 18 families have moved in the last few months. Another 14
will arrive in the next few weeks as a new batch of the oil becomes

The number of children under age 14 in Colorado who can legally use
medical marijuana has grown from seven this spring to at least 25 this
month, according to the Colorado Department of Health and Environment.
Almost all are in El Paso County.

Because there are hundreds of thousands of people nationwide whose
epilepsy is not controlled by traditional drugs, Gedde expects a boom.

"This is just the tip of the iceberg," she said. "People will continue
to come because it works. Patients are seeing between 50 and 90
percent reduction in seizures with no side effects. That's amazing."

Looking for a godsend

No side effects would be a godsend to Halabi. His daughter has tried
prescriptions that have eased her seizures, but also made her go into
a rage, made her hallucinate, made her nearly comatose and damaged her
organs. It is hard to know which problems are caused by her disorder
and which are caused by the drugs, he said.

But moving has its own perils. The night before the flight, Mia was in
the hospital with kidney stones caused by her medical treatment. Her
father worried things would not go well on the plane.

He also worries about other impacts of the move.

The family will be fractured. His 6-year old son, Mazen, will soon
return to New York to continue attending a private school that teaches
Muslim culture. His wife will return with Mazen. They don't know when
they'll be under one roof again.

"If the marijuana can work, and we can get her off this other stuff,
it will be a miracle," he said as he drove to the airport. "But it is
not as simple as taking a pill and seeing if it works. We have to move
our home, we have to move our jobs, we have to move our lives.
Ultimately, there is no way back." He sighed. "I just pray that works."

Remedy discovered

This medical migration traces its origin to 2012 and Charlotte Figi,
then 5, who has a genetic disorder called Dravet Syndrome that causes
catastrophic seizures. Doctors tried everything from barbiturates to
extreme diets to control the disorder but nothing helped. She was in
the hospital constantly. Twice her heart stopped. Not wanting to
prolong their child's suffering, her parents signed a "do not
resuscitate" order.

As a last-ditch effort, they decided to try marijuana.

Charlotte's mother, Paige Figi, was pointed to six local brothers -
Josh, Joel, Jesse, Jon, Jordan and Jared Stanley - who had developed a
new strain of marijuana that was exceptionally low in THC - the
chemical that makes users stoned - and exceptionally high in a
chemical called cannabidiol that has no intoxicating effects, but that
a handful of decades-old studies suggested might silence seizures.

Because the plant could not get smokers high, the Stanleys called
their new strain Hippie's Disappointment. Before the Figis called, the
brothers had been unable to find any market for it.

Willing to try anything, Paige mixed a squirt of oil made from
Hippie's Disappointment into Charlotte's food. Almost immediately,
Charlotte's seizures stopped.

The girl who once had 300 seizures a week now has on average fewer
than one. She began walking. She began talking. She began playing. All
with no side effects. Her parents weaned her off prescription drugs.

A video shot early this year shows Charlotte laughing and dancing in
tap shoes on the kitchen floor.

"We really don't know how it works," said Dr. Alan Shackelford,
Charlotte's physician. "The cannabidiol seems to act as a
neuro-stabilizer, but how? The research is minuscule on this."

Astonished by the results, the Stanleys renamed the plant Charlotte's
Web. This summer, CNN aired an hourlong special on Charlotte that went

Ever since, the Stanleys' phones have been ringing off the hook. There
is now a waiting list for the oil with more than 100 patients.

The brothers just harvested their fall crop and are creating a new
batch of oil. In the next few weeks dozens of families, including the
Halabis, will get the potentially lifesaving treatment for the first

Families pay from $30 to $300 per month, depending on the dose.
Insurance covers none of it, so the Stanleys subsidize the oil by
selling other medical marijuana through their chain of

The brothers are scrambling to plant more Charlotte's Web to meet
demand. At the next harvest in March, another wave of families is
expected to arrive.

Paige Figi now volunteers for the nonprofit that distributes the oil.
Almost 1,000 families have contacted the Stanleys about the oil, she
said. "This is their only hope, of course they are going to come in

'Cheerleader medicine'

Some families did not wait until they were legal.

Paula Lyles calls Charlotte's Web her "cheerleader

A week ago she moved from Ohio to get the oil for her daughter,

Jordan has Dravet Syndrome. Years of seizures combined with years of
heavy drugs have left her in a fog, listless, slow to speak. That is a
good day. Jordan is 18, but because of Dravet looks about 12.
Mentally, her mother said, she is about 6. Like a lot of 6-year-old
girls, her dream is to one day be an ice skater and

"That's why we call it the cheerleader medicine," Lyles said. "This is
her second chance at life. If this works, she really can be a

Lyles leaned over and asked her daughter if she'd like to go ice
skating some day. Her daughter instantly smiled.

Last week she was on her way into a local Olive Garden restaurant
where she and Jordan were meeting another refugee family.

The two spotted Dara Lightle and her 9-year-old daughter, Madeleine,
and gave them hugs.

Over iced tea and breadsticks they discovered how similar they are.
Both are churchgoing conservatives who had scoffed at the idea of
medical marijuana.

"I thought marijuana was just for getting high," said Dara Lightle. "I
would never consider giving it to a child."

"Same way," said Lyles. "I've never smoked a joint. Always totally

Epilepsy forced them to confront their preconceptions.

Madeleine was a cheerful and talkative girl, but hundreds of tiny
seizures per day slowly started wearing her away. After being stuck at
a first-grade level for years, she started slipping - forgetting where
she was and struggling to speak. After trying a series of increasingly
powerful drugs with no luck, Madeleine's doctor's told her family it
was time to remove half of her brain.

Then the family saw the video of Charlotte.

"We prayed about what to do, I was afraid to tell anyone. I was afraid
we would lose friends. But we prayed and prayed and the Lord said just
go," Lightle said.

Lyles nodded. "You pick up and go. You split up the family. It's a
sacrifice. But families like ours, we have been sacrificing since the
day they were born."

Hope and anger

Medical marijuana is legal in 20 states and Washington, D.C. It is
possible to find people in those states selling oils claiming to be
high in cannabidiol. But the majority of families moving to get oil
for their children seem to be coming to Colorado Springs, people in
the community say.

They say there are three reasons: First, no place has a better
product. The Stanleys' marijuana is lower in psychoactive THC and
higher in beneficial cannabidiol than any on the market. The Stanleys
perform rigorous testing to ensure doses and have a stable supply
families feel they can rely on.

Second, a few doctors here who have seen the benefits are willing to
recommend marijuana for very young children.

Third, a community forming here creates its own draw. The newly
arrived encourage others to come. They help other refugees find
houses, connect them with doctors and lead them through the steps to
register as a medical marijuana user. Just as valuable, they offer a
comforting stand-in for the friends and family refugees leave behind.

Last week the Figis invited more than 50 over for a backyard

"I'd never met Paige but she gave me a hug," said Mohammad Halabi.
"It's real. They treat you like family."

While there is hope among these families, there is also anger - anger
that a patchwork of state and federal laws bar families from getting
cannabis at home.

Repeated studies going back to 1970 have shown a strong potential for
cannabidiol to help epilepsy, but federal laws made cannabis difficult
to study in the United States. In addition, Dr. Gedde, a former
clinical researcher, said there was a stigma in the medical field.
"Studying marijuana was just not seen as a serious thing."

While pharmaceutical grade cannabidiol is available in other
countries, clinical trials for FDA approval in the United States are
just getting underway.

"I'm a mom; I don't have a PhD.," said Paige Figi. "But I was able to
stumble onto this. I just think it's unfortunate parents are left to
figure this out and science has to catch up."

Most of the families resent that cannabidiol oil, which doctors say
has few health risks, can't be sent across state lines, said Holli
Brown, who moved from Missouri to Colorado for her 9-year-old
daughter, Sydni Yunek, and administers a Facebook page for the refugees.

"That means these families are stuck here," she said. "They are angry
it has to come to this. The laws make no sense," she said.

But maybe, she said, stories of children in Colorado Springs getting
helped by cannabis oil will help change people's minds and change state 

"It will take time, but I hope people will see this for what it really
is," she said. "Until then, people will just keep moving to Colorado."

In a few weeks, the Halabis will get the oil.

If it works and word spreads, Halabi said, maybe someday they can
return home.

"If this works for these families," he said, "every state legislature
will have to answer the question, 'Why not here?' "
- ---
MAP posted-by: Matt