Parents who choose hemp oil for children face fear, hope, criminal label
Sitting in her son Benji’s school, Nancy Murillo huddles over her iPhone with two staff members, showing off a recent video of the 8-year-old. When school nurse Gail Therrien, who has been working with Benji for months, looks up, her eyes are wide and filled with tears. “I began this year with a child who had difficulty holding up his head,” she later shares.
The video showed Benji riding a tricycle, a big feat for the little guy, who less than two years ago lived nearly zombie-like except when his body was wracked with seizures. It’s yet another sign that Benji, who has a severe form of epilepsy known as Dravet syndrome, has made a startling turnaround since he began taking hemp oil in late 2013.
The oil, commonly known as Charlotte’s Web, is extracted from a high-cannabidiol (CBD), low-tetrahydrocannabinol (THC) marijuana strain grown by the Stanleys, a group of five brothers that operates one of Colorado’s largest growers and dispensaries. CBD harbors marijuana’s medicinal properties, while THC is what gives users the “high” associated with pot.
Knowledge of the oil exploded two years ago after a CNN story and a Dr. Sanjay Gupta-produced documentary called “WEED” focused on cannabis’s medicinal properties. Both featured Charlotte Figi — a Dravet syndrome sufferer after whom the oil is named — and her dramatic response to Charlotte’s Web. She went from hundreds of seizures a day to two or three a month.
For some, the oil is nothing short of a miracle. But the actual statistics are more sobering: About a quarter of those receiving Charlotte’s Web achieve significant seizure control. And critics cite a lack of evidence and research regarding its effect on a not-yet-fully developed brain. Still, for families like the Murillos of Denver, the oil represents hope.
When Benji is wheeled into the cafeteria at Elkhart Elementary in Aurora, he’s barely awake. Before Charlotte’s Web, that would have been because of his seizure medications. Today, it’s because he fell asleep in class during a rousing Disney sing-a-long. He’s just returned from a family road trip to San Antonio ̶ where he receives therapy ̶ that has left him tired. But by the end of lunch, he’s holding his head up, answering questions with a nod to the left or right, and giggling when his mom kisses him — nothing like the Benji of 2013.
That year, Benji suffered five severe episodes and was hospitalized multiple times. Murillo, 35, was in despair, watching her son’s quality of life decline and his number of medications increase. “Some of his seizures were lasting 40 minutes to an hour and a half,” Murillo says. “And I thought, ‘How is that possible? He’s like a little zombie because of these medications, and yet he’s still going through all this?’“
That’s when Murillo reached her limit. Her sister had shared an article about Charlotte’s Web, and after some more research, the desperate Murillo started the paperwork with Realm of Caring, the nonprofit side of the Stanley brothers’ operation. “I just thought, ‘I’ve tried everything, and it’s getting worse,’ ” says Murillo, who admits to voting against medical marijuana because of the stigma.
While Benji’s improvements might not seem momentous to some, for those who know him well, they’re massive. His seizures are less intense and happen on average two or three times a day, his conventional medications have been cut by two-thirds, and he hasn’t been hospitalized for his epilepsy since starting the oil, says Murillo, whose views on medical marijuana have changed.
After her ex-husband was pulled over and threatened with arrest In Texas while trying to transport a first dose of hemp oil to their daughter, Ava, Lindsey Patton planned on a life of regular trips to Colorado to ship the medicine back home. Still technically illegal, taking the risk seemed to be the only answer.
Ava was 2 years old but developmentally on par with a 2-month-old, her little body bombarded by seizures, medications and a host of other medical disorders. Before she started Charlotte’s Web in March, she couldn’t roll over, vocalize or hold her head up. “She didn’t have seizures for a week,” Patton says, explaining CW’s immediate effect. In the weeks thereafter, Ava suffered only a couple of minor seizures and was more awake and responsive to voice, touch and music, her mother says. She was more vocal, her eyes would light up, and she would look around, says Patton, who was grateful for her daughter’s new alertness. But the experience was short-lived.
On Mother’s Day, Patton found Ava unresponsive in her bed, and paramedics were unable to revive her only child. Although still grieving, Patton says she has no regrets about her choice to try Charlotte’s Web, which she does not blame for Ava’s death. “Given her medical past, it could have been one of 10 different things,” says Patton, who decided against an autopsy. “I think her body just gave out.”
Patton does have one regret: not putting Ava on CW sooner, she says, recalling how her daughter smiled four or five times the Friday before her death, an unusual but lasting gift for her mother. “The three months on Charlotte’s Web were the best three months she ever had,” Patton says. “I wanted her to experience happiness and comfort, and it brought her that mental and physiological peace.”
Taking care of such a disabled child was all-encompassing for Patton, but something she had planned to do for the rest of her life. “Before she died, I thought I wanted more time, and now that I have it, I don’t want it,” she says.
Patton, who has asked that friends and family make donations in Ava’s honor to Realm of Caring, plans to spend much of her extra time as an advocate for hemp oil’s benefits. “I still support it 100 percent. I’m committed from here on out, whether it’s talking to Congress or with families. I’ll sit on (the Realm of Caring’s) board. I’ll do whatever they need me to do. There’s no question that’s part of my purpose.”
Supporting parents like Patton, as well as the many “marijuana refugees” who relocate to Colorado and have to face legal threats as well as the mortality of their own children, is one of Heather Jackson’s main goals. “This is a forgotten community, and they are completely out of options,” says Jackson, executive director of Realm of Caring and mother of Zaki, 10, who has Doose syndrome, another catastrophic form of epilepsy. After starting on Charlotte’s Web, Zaki has gone 30 months without a seizure. “I have not witnessed families that love their children more,” Jackson says. “The fact that they have to think twice or feel like criminals makes my blood boil.”
Hurdles for happiness
Parents seeking Charlotte’s Web face many hurdles, including the stigma that surrounds marijuana, which is labeled a Schedule I drug. The label, the most dangerous classification, leads to a lack of research funding needed to prove or disprove the drug’s effectiveness. Inconsistencies in how marijuana is treated at the state and federal levels also create difficult-to-navigate legal issues for these parents.
However, some signs suggest the tide might be turning. News polls show the vast majority of Americans support the use of medical marijuana. Twenty-four states and Washington, D.C., have legalized its use medically, while a number of others have legalized or are attempting to legalize high-CBD hemp oil.
In April, President Obama came out in support of medical marijuana in Gupta’s follow-up documentary, “WEED 3: The Marijuana Revolution,” saying, “I think carefully prescribed medical use of marijuana may in fact be appropriate, and we should follow the science as opposed to ideology on this issue.” And the CARERS Act, a federal bill, would reclassify marijuana to a Schedule II drug (putting it in the same category as many narcotic pain relievers) and prevent those who use it medically from being federally prosecuted.
Passage of the CARERS Act could open up more research funding for studies like Dr. Ed Maa’s, director of Denver Health’s epilepsy clinic, who is evaluating the use of Charlotte’s Web in Dravet syndrome patients. “The idea is to see how many have a 50 percent or more reduction in seizure frequency, which is what typical anti-seizure drug trials define as a response or non-response,” Maa explains. “We then look at the genetic differences.”
Maa intends to present preliminary data to the American Epilepsy Society later this year, and hopes the study will help secure funding for a larger genetic analysis. “There is definitely a dramatic national interest in this,” he says. “I think the politics need to leave it to people who are trying to do the science. Let’s study it — either it works or it doesn’t — and be done with it.”
For Jackson and the Realm of Caring folks, the answers should be even more simplistic. “I agree that there is still a lot that we don’t know. But people can decide whether that matters or not for their own families, “Jackson says. “These people have been making those tough decisions their child’s entire life.”
Murillo agrees, saying all she wants for Benji is the same thing all parents want: “to have happy, healthy children. It’s comforting to see that this is something that can’t be brushed under the rug anymore,” Murillo says, gazing at her son. “That boy, everywhere he goes, people say, ‘Oh, there’s the guy with the beautiful smile,’ she says, proudly. “The last 15 months of his life have been the BEST ever.”
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