Pubdate: Sun, 20 Oct 2013
Source: Gazette, The (Colorado Springs, CO)
Copyright: 2013 The Gazette
Contact: http://www.gazette.com/sections/opinion/submitletter/
Website: http://www.gazette.com/
Details: http://www.mapinc.org/media/165
Author: Dave Philipps

FAMILIES OF CHILDREN WITH EPILEPSY MOVING TO COLORADO, DRAWN BY 
SUCCESS OF MARIJUANA OIL

When Mohammad Halabi was a boy, his parents fled war in Lebanon to 
give their child a chance at life. 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 with the 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, Miriam, 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 illegal.

"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. Parents 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.

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 next-door neighbors, who just moved with their epileptic 
daughter from Virginia. The one common thread is hope that marijuana 
can save their children.

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. An additional 
14 will arrive in the next few weeks as a new batch of the oil 
becomes available.

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

Since 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."

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 difficult to know which problems are caused by her 
disorder and which are caused by the drugs, he said.

But moving has its 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 airplane. What if the 
pressure change caused a seizure? Mia is fragile. He hoped she would make it.

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, though 
having to choose between children has made her heartsick. 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 it works."

'A lot more' are coming

This medical migration traces its origin to 2012 and a 
then-5-year-old girl named Charlotte Figi 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. She went seven days without an attack. 
The Figis now give Charlotte the oil twice a day. 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 weened her off her other 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 miniscule on this."

Astonished by the results, the Stanleys renamed the plant Charlotte's Web.

This summer, CNN aired an hour-long special on Charlotte that went viral.

Ever since, the Stanleys' phones have been ringing off the hook. More 
than 100 patients are on a waiting list for the oil.

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 time.

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 dispensaries.

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.

"There are a lot more coming. A lot more," said Paige Figi, who 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 droves."

Developing a community

Paula Lyles calls Charlotte's Web her "cheerleader medicine."

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

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 on 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 cheerleader.

"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 cheerleader."

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

Last week they stopped by a local Olive Garden restaurant to meet 
another refugee family.

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

Over ice tea and bread sticks, they discovered similarities. Both are 
church-going conservatives who had scoffed at the idea of medical 
marijuana. Both had run out of options. Both feared what friends and 
family would say.

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

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

Epilepsy forced them to confront their preconceptions.

Madeleine was a cheerful and talkative girl, but hundreds of tiny 
seizures per day slowly started wearing away at her. 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 positive change in her 
condition, Madeleine's doctors told the 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."

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 
that families are comfortable relying on.

Second, a few doctors here who have seen the benefits of Charlotte's 
Web are willing to recommend marijuana for 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 the refugees leave behind.

Last week, the Figis invited more than 50 refugees over for a backyard bonfire.

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

Families hopeful, angry

At the Denver airport, Halabi spotted his wife, his mother, his son, 
and Mia. He surged like a salmon upstream through the crowd, swept 
his daughter's limp body up in his arms and kissed her. He bent with 
one arm to hug Mazen, then kissed Miriam.

"Everything was fine, but a long flight. We're exhausted," Miriam told him.

While there is hope among these refugee families, there is also anger 
- - anger that 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 Ph.D.," 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. They can't legally travel. 
They can't see family. They can't see doctors in other states. 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 laws.

"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."

Hoping to return home

The Halabis arrived at their new house and laid Mia on a beanbag 
chair. While their son raced up and down the stairs, exploring all 
the rooms, Miriam unpacked an armload of prescription bottles and 
Mohammad plugged a tube into Mia's stomach so she could eat.

In a few weeks they will get the oil. They are praying it works.

If it does, 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?'"
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MAP posted-by: Jay Bergstrom