Dustin Chandler of the Birmingham area holds his 3-year-old daughter, Carly, next to Gov. Robert Bentley during a gathering at Pelham City Hall on July 22, 2014, in celebration of the passage of Carly’s Law.
As another week passes, the understanding of CBD on a global level progresses. To understand the importance of this progress, one only needs to look towards families in Oklahoma who continue to make some of the most difficult decisions of their lives for the health and well-being of their children.
Five-year-old Olivia and her mom Hillary Rayburn moved to Colorado Springs in search of a solution to Olivia’s daily seizures. Oklahoma’s News9 highlights the challenges Oklahoma families continue to face in accessing CBD.
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, a sativa marijuana strain with medical potency due to its high-CBD content. This strain was specifically cultivated by Colorado breeders The Stanley Brothers for a young epileptic patient named Charlotte.
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.
This was one of the first effective strains bred with little to no psychoactive effects. However, due to its source from marijuana, families across the country have been forced to pack up and make a life changing decision to chase after it in one of the states where marijuana is legal.
“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.” As these stories continue to grow, lawmakers in Oklahoma are considering allowing medical trials of CBD oil for children with seizures.
“However, Zoey and Olivia’s families say they’re headed west. They found something better than gold in the mountains and they’re not coming back.”
Despite these challenges, there is strong progress and awareness being pushed forward across the nation from Alabama to Utah. The University of Alabama at Birmingham is moving forward with a study using marijuana-derived cannabidiol with a focus on children and adults with severe seizure disorders. While they are still awaiting federal permission, information from the UAB Cannabidiol Program states there “will be no charge to patients for CBD or for participation in the trial, but they will need to continue to see their regular primary care physician and neurologist.”
UAB spokesman Bob Shepard said the company that produces the CBD oil for use in the study, which was authorized by the state lawmakers earlier this year, is providing the medication for free. “Because of that, we’re not going to charge for it,” he said.
The announcement has generated praise from supporters of the study, including Dustin Chandler, who was the primary driving force behind the Carly’s Law legislation named after the 3-year-old daughter he has with his wife, Amy Chandler.
“That comes as a blessing to those that were curious as to how much the medicine was going to cost them to be in the study,” Dustin Chandler said in an interview today. “To hear that this is going to be free for patients in the study and to be in the study will be free, that’s big news for these parents, including me.”
Already UAB has about 130 adults and 140 children on a waiting list to participate in the study. Children’s of Alabama has another 136 possible patients for the study, according to UAB.
Knowing the amount of seizures his daughter endures on a daily basis, Chandler is ready to start the trials to see if the CBD provided in oil form can help like it has shown in some patients in other states.
“There is no worse feeling in the world than watching your child suffer. I live that every day and there’s hundreds of thousands of other parents that live that every day,” he said. “We all have to remember there is a federal regulatory process. We just want it happen as quick as it can and then make more strides to show this is an effective medicine to help a lot of people.”
Finally, in Salt Lake City, Nichole Montanez’s journey across the US to raise awareness for the incredible impact of CBD on families is highlighted. Montanez is a photographer who came up with “Faces of Cannabis.”
Faces of Cannabis is a photography project aimed at raising national awareness about cannabis oil, and the faces of the drug happen to be children suffering from a debilitating disease.
“I started this project over a year ago,” says Nichole Montanez, the photographer who came up with “Faces of Cannabis.”
“I’ve been to five different states, six including Colorado, and after today, photographed probably 150 kids,” Montanez said.
She’s photographed many children and parents connected to this journey.
“When nothing else works, you have to do everything you can for your child,” said Angie Mathews, whose son has epilepsy.
“I think the main goal is to put a new face to medical cannabis and put the children on the forefront and remind people why this is important and why we’re doing it,” Montanez said. “These are children. They’re children just like your children or my children, and they deserve a chance.”
The organization Hope 4 Children with Epilepsy helped host Wednesday’s portrait project “Faces of Cannabis.” The pictures will be displayed on a website with the children’s stories, and the project will be used to lobby legislation and raise awareness not just among the public but also with lawmakers about the benefits of cannabis oil.
Read The Inspirational Stories Featured On Faces Of Cannabis Here
Hope 4 Children said they will be joining forces with other organizations across the country to lobby for Charlotte’s Web Medical Hemp Act, which is a federal bill proposing to remove cannabis oil and therapeutic hemp from the list of controlled substances.
While progress is slow, there are countless families fighting for the acceptance of cannabidiol in all forms nationwide. Nectar Leaf will continue to support this fight on all fronts until every family has proper access to affordable and high quality CBD.