Wednesday, November 12th 2014, 10:52 pm
In a surprise move earlier this year, Gov. Mary Fallin advocated the study of legalizing a certain type of medical marijuana, concentrated oil used to help children with seizures. It is exactly what some Oklahoma families have been fighting to get for their children, and some have even moved to Colorado to get it.
One year ago, Zoey Johnson couldn't talk and could barely walk. She was having seizures all the time and her family had run out of options.
"It was at the point that if we didn't try it, she could have died," said Mallory Johnson, Zoey's mother.
That "it" is Charlotte's Web, oil made from a specific strain of marijuana plant. Johnson gave it to her daughter for the first time about a year ago.
"In that first eight days she said 20 new words and wrote her name," Johnson said.
Five-year-old Olivia and her mom Hillary Rayburn moved to Colorado Springs seven months ago for the same reason.
"She was seizing daily. It was too many to count," said Rayburn.
However, in the shadow of Pikes Peak, she was able to legally try what she calls her last hope.
"I could see something, a sparkle," Rayburn remembers. "It sparked a new word here and there and no seizures."
The Charlotte's Web plant was actually developed by a group of brothers from Shawnee, Oklahoma, who bred the plant to be high in CBD, which has the medicinal properties and low in THC, which has the psychoactive qualities. The waiting list is nearing 10,000, so the brothers are now moving their operation into a lab so they can increase production.
"Of course, our number one priority is to get patients off the waiting list," said Bear Reel, a molecular plant biologist.
Zoey's doctor, Dr. Alan Shackelford, is one of two doctors that first tried the plant on a 5-year-old girl named Charlotte.
"The response was beyond anything I could have ever expected," said Shackelford.
He says with Zoey, he has seen amazing success since then.
"I would venture to say that more than 80% of the children we see who have extractable seizures respond to some degree," Shackelford said.
Still, to legally get Charlotte's Web, both families had to pick up and move. A move Rayburn says was not difficult because of the response she says she and other parents got from Oklahoma legislators when she tried to convince them to legalize Charlotte's Web.
"Finally we posed the question, ‘What would you do if this were your kid?''" said Rayburn. "And they both turned to me and they said ‘Oh, I'd move to Colorado."
Still, for dozens of other families in Oklahoma, financial and employment considerations make moving difficult. Their best hope is a change in attitude in the legislature, which seems to be happening. Lawmakers are considering allowing medical trials of CBD oil for children with seizures.
However, Zoey and Olivia's families say they headed west and they found something better than gold in the mountains and they're not coming back.
"Everything has fallen into place and it's worked like it's supposed to work and you get to know her and she's great," said Johnson.
The Oklahoma Epilepsy Foundation says any research that can benefit people with epilepsy they support and that includes Charlotte's Web.
November 12th, 2014
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