Khalene Hassler and Charles Hopkins don’t want to leave their home state of Kansas, but they feel they have no choice.
Their 16-month-old son Brenden is in desperate need of marijuana.
Since shortly after birth, Brenden has had frequent seizures, sometimes as many as 150 a day. Walls and floors of the couple’s south Salina home are padded to prevent Brenden from smashing his head on the surfaces.
Several pharmaceutical drugs have been prescribed for Brenden but either have not stopped the seizures or have been harmful to her son, Hassler said.
“One medication kept him from moving at all,” she said. “He could roll over, and that’s about it. He could barely lift his head. But since we stopped it, he’s able to crawl again.”
A miracle oil
Hassler and Hopkins read about a young girl named Charlotte Figi, who also had severe epilepsy. Charlotte’s condition significantly improved after she was given a thick, amber-colored oil extract high in cannabidiol, or CBD, that was taken from cannabis plants.
The strain, also known as Alepsia, removes most of the tetrahydrocannabinol, or THC, the psychoactive ingredient in marijuana that causes pot smokers to get high.
The CBD chemical has been shown to have medicinal properties that quiet the excessive electrical and chemical activity in the brain that causes seizures.
Charlotte’s condition improved so rapidly after taking the extract — which is not smoked but is generally administered orally under the tongue or in a drink — that the strain’s distributors, the Stanley brothers of Colorado Springs, named it Charlotte’s Web.
Realm of Caring
Inspired by the success of their medicinal marijuana business, the Stanleys started the Realm of Caring Foundation, a nonprofit organization that provides cannabis to adults and children suffering from epilepsy and other diseases including cancer, multiple sclerosis and Parkinson’s disease who can’t afford this treatment.
A month’s supply could cost between $150 and $300 and is not covered by insurance. But for Hassler and Hopkins, it could be the treatment that allows their son to have a normal life.
But marijuana in any form, medicinal or otherwise, is illegal in the state of Kansas. So the couple feel they have no choice but to pack up Brenden and Khalene’s other children — Taysia Hassler, 8, Desean Hassler, 6, and Ayden Hassler, 5 — and move to Colorado.
They are among dozens of families from states not allowing medical marijuana who have become like the Joad family in John Steinbeck’s classic “The Grapes of Wrath.” Only instead of leaving dust bowl-stricken farms in hope of a new start in California, these families are leaving their homes and families for hope of medical treatment in the “promised land” of Colorado.
“All our family, all our friends are in (Salina),” Hopkins said. “We’ve been here our entire lives. Now, we’re being completely uprooted.”
Hassler said it’s the right move for her family, no matter what the outcome.
“It’s got to be better than what they’re doing here, which is nothing,” she said. “It’s worth it to give our son some kind of life.”
Even if the family moves to Colorado by August as planned, it still could be a long time before Brenden can be treated with Charlotte’s Web, if at all.
“We have to establish residency in Colorado, and then get a state-approved medical marijuana card,” said Hassler, who plans to initially go to Colorado with Hopkins in late May.
If the medical marijuana card is approved, she said, Brenden can be put on a waiting list for Charlotte’s Web treatment, which is available in a very limited supply.
“They plant twice a year, in October and April, and only plant a certain amount depending on how many are on the waiting list,” Hassler said. “If it’s planted in October, Brenden is not going to get it until March at the earliest. I’m not even sure how long the waiting list is; I’m just praying.”
Hassler and Hopkins are frustrated at what they feel are the misconceptions of medical marijuana, especially an extract like Charlotte’s Web.
“A lot of people don’t understand that you don’t smoke this,” Hassler said. “It’s a pasty substance, like a thick liquid. There are a lot of compounds in hemp plants, and it’s the combination of all of them that makes kids get better, especially those with epilepsy.”
The U.S. Food and Drug Administration is hesitant to approve medical marijuana because of lack of research on its long-term effects. Officials say there is insufficient medical evidence and no sound scientific studies to support the medical use of marijuana and more research and clinical tests are needed to determine its effectiveness, if any.
Hassler said she doesn’t want to toy with her son’s well-being while waiting for slow-moving government officials to decide what’s best for her child.
“If it’s going to make our child’s life better, I don’t see why they don’t do it,” she said. “If the higher-ups had a kid with epilepsy, they’d be all over it.”
Kansas for Change
David Mulford, treasurer of Kansas for Change, a nonprofit grassroots organization dedicated to changing marijuana laws in Kansas, has counseled other families who have loved ones with epilepsy or cancer and has seen firsthand how desperate they are for advice and help.
“If there’s a choice between a child suffering or getting relief, they will do whatever it takes to help their child,” said Mulford, who is based in Hutchinson. “They need to look at this the right way, talk to a doctor out there, find out the facts and get on a program.”
By the middle of May, Mulford said, a support link will be available on the Kansas for Change website at kansasforchange.com. It will be designed to support parents leaving Kansas for Colorado by supplying them with information that may include medical dispensaries, physicians and moving challenges.
“We’ll also let them know about the research on other strains out there,” he said. “Charlotte’s Web has the most media coverage, but there are other strains being made.”
Mulford, who has been using medical marijuana for decades for debilitating spasms, said some states are close to legalizing marijuana for medical use but are hampered by the Drug Enforcement Administration.
“These old marijuana laws are outdated and draconian,” he said. “In the meantime, people are forced to go through mind-boggling pain and discomfort. They’re in need of guidance and support, and that’s what we’re here for. But it’s a real David and Goliath battle.”
Hassler and Hopkins are cautiously optimistic about their move. Hopkins, who works a construction job in Salina, said he has experience and skills that should land him a good job. Hassler is certain her children will make a quick adjustment to their new environment.
What disturbs Hassler is that if and when Brenden starts taking Charlotte’s Web, he can’t be brought back to Kansas because of its illegality in the state, “unless we bring him without his medication,” she said.
That means anyone from their home state who wants to see Brenden will have to make the trip to Colorado, which she said will be difficult for some, including Brenden’s grandparents.
“It’s so disappointing because everything we have and love is here,” she said. “But we can’t bring Brenden back unless they legalize it, which I don’t see happening anytime soon.”
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Aricle and images courtesy of: Salina.com