Updated: December 23, 2013 at 3:49 pm
This is the first Christmas that the Swann family won't spend with extended family in Alabama - a situation that makes members shake their heads in disappointment and tear up with joy.
They can't go home because they moved to Colorado Springs this fall to treat their daughter Allie's severe epilepsy with a marijuana oil that is illegal in Alabama. But, they say, their sorrow is overwhelmed by the joy they feel seeing their daughter's rapid improvement.
After three weeks of taking the oil, her seizures are drastically reduced.
"It's the greatest gift. It really is," said Allie's father, Butch Swann. "It's so sad. We have something so joyful to share, and we can't be there. But that is OK. We'll spend Christmas in Colorado with our new family."
That new family is made of almost 100 families such as the Swanns who moved to Colorado this fall, drawn by online videos and media reports showing a marijuana oil called Charlotte's Web that appears to help children with debilitating seizures that other treatments have failed.
The migration has driven the number of registered pediatric medical marijuana users in the state from four in 2012 to 81 as of October. Another 171 are on a waiting list for the oil.
The migrants have formed a tight community bound by their children's common struggle. They share meals and volunteer to baby sit, swap news of victories and setbacks, each uncertain how the oil will affect their children.
Many say the pain of missing family is soothed by the progress they see after just a few weeks or months on the oil. They expect more improvement in the coming weeks as they wean children off ineffective prescription drugs.
In Alabama, 14-year-old Allie averaged 10 seizures a day, including unexpected collapses that left her bruised and cut. She lost most of her ability to speak and could do little on her own. Dozens of drugs and a brain surgery did not help. She lived in a constant state of aggravation with daily screaming bouts that could last hours.
"Her life was a storm," Butch Swann said. "If we had stayed in Alabama, I don't think she would have made it."
After her first dose of the oil in late November, the screaming stopped, and the seizures are almost gone.
Allie takes a few drops of green oil by mouth once a day. It has no psychoactive effects, but has unexpected benefits. Her coordination has started to return. She can walk down stairs and drink from a cup. After a week on the oil she began speaking more. First just a few words: Dog, ball, airplane. Then simple sentences.
One night Butch Swann had just finished feeding Allie dinner when she said, "Daddy, I want more."
He nearly dropped a plate.
Now she asks to go for car rides. She even told a reporter recently that she was feeling better and started clapping her hands.
"Those little things may not seem like a hill of beans to most people but they are everything to us," Butch Swann said, putting his arm around his daughter on their couch. "And just this, calmly being able to sit and enjoy life, it didn't happen before. If this is all the progress we see, it will be worth it."
Other families report similar milestones.
"Our lives have changed," said Dara Lightle, who moved from Virginia in September after doctors there said the only treatment left for her 9-year-old daughter Madeleine's nearly constant seizures was to remove half of her brain. "We were losing Maddy. Now we are getting her back."
Her daughter has not had a seizure in almost two weeks. Her once-vacant stare has brightened and her memory and ability to learn have come roaring back.
"She used the word 'diagonal' with me the other day," Lightle said. "She keeps adding new words all the time."
At a recent Christmas party organized by the group, almost 200 people filled a local gym. Lightle watched as adults chatted over plates of ham, biscuits and pie. Kids ran past the long tables laughing, waving candy canes and bouncing basketballs.
Madeleine was batting balloons and stopped to say hi to a reporter she remembered meeting a month before.
"She would not have remembered before. The seizures just would have erased it," her mother said. "She still has bad days, but her bad days now are better than her good days before."
Charlotte's Web is made from a local strain of marijuana exceptionally low in THC - the psychoactive chemical that makes users stoned - and exceptionally high in a chemical called cannabidiol that has no intoxicating effects, but seems to regulate overactive brain signals.
It has never been tested by the Food and Drug Administration. There are no scientific studies of its effectiveness or risks in children. It is considered an illegal drug with no medicinal potential by the federal government.
Studies on animals and small groups of humans have shown the substance reduces seizures, but legal and cultural barriers have kept most epilepsy doctors from viewing it as a legitimate treatment, even in the 20 states where medical marijuana is legal.
Clinical trials of cannabidiol that could lead to FDA approval are pending, but approval is likely years away and many families say their children are too sick to wait. Instead, they have come to Colorado where some say they have observed quick results with few side effects.
At the party, Marisa Kiser was bouncing her 19-month-old son Ezra.
"His big seizures are gone, he only has little ones that last a few seconds," said Kiser, who moved from North Carolina. Before the oil, Ezra barely moved. Now he cries and holds his head up, watches things around the room and pulls away when his feet are tickled. Even his eyesight, which doctors said was permanently damaged by seizures, has improved.
Kiser said moving for the oil has been worth leaving family and friends.
"Everything the doctors ever did just made him worse," Kiser said. "This is the first thing that made him better."
Reduction in seizures
The first formal study of children on Charlotte's Web reinforces what parents are saying. Dr. Margaret Gedde, a Colorado Springs pathologist, surveyed 19 parents of children using Charlotte's Web this fall. The results, which she presented at the American Epilepsy Society's annual meeting this month, show 16 reported reductions in seizures. Eight parents said seizures had dropped 80 percent or more, and two parents said seizures had disappeared. They also reported other benefits, including increased alertness, better mood and improved sleep. None reported negative side effects.
"The overall positive results," Gedde concluded, "suggest that further studies of cannabidiol are warranted."
With seizures on the wane, many parents are now weaning their children off addictive prescription drugs.
Most of the children have been taking barbiturates and benzodiazepines for years and face a long list withdrawal symptoms including pain, sleeplessness, nausea, tremors, and increased seizures.
"It isn't pretty," said Holli Brown, whose 9-year-old daughter Syndni Yunek wears a sparkly pink helmet to protect from collapses caused by seizures. Her seizures dropped by half when she started taking the oil and she went six days seizure-free - a milestone she had not experienced in years. Before the oil she spend most of her day medicated and drooling on the couch, but now she plays ball and makes the laundry basket into a cage for stuffed animals.
"You can see it in her eyes," said Brown, who moved from Missouri. "She has this sense of amazement in herself at what she can do."
In addition to withdrawal symptoms, parents say, some anti-seizure drugs interact badly with the marijuana.
The Halabi family, who moved from New York for their2-year-old daughter Mia, said her seizures stopped for three weeks once they started using the oil.
"Before she woke up every day by having a seizure. Suddenly, she was waking up laughing and happy," said her mother, Miriam Khaled.
But then the seizures came back. Her parents say it is likely because the oil blocks an enzyme, causing her prescription drugs to build up to toxic levels, sparking more seizures. They reduced Mia's daily dose of oil until she can get off her prescriptions - a process they think will take months.
"The doctors don't know what to tell us, this is all new to them," said her father, Mohamad Halabi. "The families here, were are all learning from each other."
"I'm just glad the other families are here," added her mother. "If they weren't, I might have given up."
Contact Dave Philipps: 636-0238