|By Dave Philipps, The Gazette (Colorado Springs, Colo.)|
|McClatchy-Tribune Information Services|
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
The Halabis live in
"As soon as we saw it, we knew we had to go," he said.
Families of children with severe epilepsy are moving to
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
They call themselves marijuana refugees.
"These families are really desperate," said Dr.
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
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
"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."
"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
As a last-ditch effort, they decided to try marijuana.
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.
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
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
Developing a community
A week ago she moved from
That is on a good day.
"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
The two spotted
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
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
Families hopeful, angry
"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
While pharmaceutical grade cannabidiol is available in other countries, clinical trials for
"I'm a mom, I don't have a Ph.D.," said
Most of the families resent that cannabidiol oil, which doctors say has few health risks, can't be sent across state lines, said
"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
"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
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?'"
(c)2013 The Gazette (Colorado Springs, Colo.)
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