Since he was just a few months old, 10-year-old Zaki Jackson has suffered from a rare form of epilepsy that, at its worst, causes him to have thousands of seizures a day. The seizures, which his mother describes as a “full body electrocution,” render him unable to talk or walk, and sometimes cause him to stop breathing.
Over the past decade, his family has tried to combat his syndrome with 17 different pharmaceutical medications, a specialized diet and alternative forms of therapy like acupuncture. The various medications have caused him to gain weight, become incoherent, experience extreme cramping and lose his ability to sleep, but they’ve never stopped the seizures.
“His brain could never function well,” Dr. Margaret Gedde, one of Zaki’s doctors, told The Huffington Post. “He could never be present.”
Gedde recommended Zaki start taking a strain of medical marijuana that’s high in cannabidiol, a non-psychoactive ingredient known for treating seizures, and low in THC, which causes pot smokers to feel “high.” Since Zaki began the treatment more than a year ago, he has been seizure-free.
“He had 10 years of nonstop seizures and sedating medication,” Gedde said. “He’s now able to start developing as a normal child. He’s a delightful, charming kid. Before that he couldn’t even be in contact with people. It was a dramatic, complete change.”
Zaki is one of more than 180 Colorado children currently being treated with a special strain of medical cannabis that’s helping to combat their extreme seizures and other debilitating conditions. The strain, known as “Charlotte’s Web,” was developed by a group of brothers who run the Realm of Caring Foundation in Colorado Springs. It is named for 7-year-old Charlotte Figi, whose successful treatment was featured in Dr. Sanjay Gupta’s CNN documentary “Weed” last year.
Charlotte’s Web and similar strains are administered in liquid or capsule form and, Gedde says, produce little to no side effects. Because of the low THC count, users don’t experience a traditional marijuana high.
“It’s amazing; it’s completely remarkable,” Gedde said. “It does stop seizures. It doesn’t hurt them.”
Marijuana has a long history of effectively treating seizures. In 1843, British Army doctor William O’Shaughnessy published an article documenting his use of cannabis oil to stop an infant’s near-constant convulsions. But because marijuana remains illegal on a federal level, modern research scarcely focuses on the plant’s medical benefits.
The use of cannabis treatment in cases like Zaki’s is “groundbreaking, in that we haven’t had the chance to document this,” Gedde explained. “We’re trying to pull the experiences of these parents into publishable work. Animal and laboratory studies help support and explain what we see.”
Gedde, who holds a doctorate in biophysical chemistry from Stanford University, spent years in the pharmaceutical industry before switching to a focus on alternative medicine. She recently decided to dedicate her Colorado-based clinic solely to medical cannabis.
“I realized the substances being chosen for development in the pharmaceutical industries weren’t necessarily the ones that patients need,” she said. “Marijuana can do all these things, but it’s not toxic or harmful.”
Since the story of Charlotte’s recovery made national news, hundreds of families in similar situations have relocated to Colorado from states where medical marijuana is illegal in the hopes that their sick children might experience the same results. More than 100 families are currently on a waiting list for Charlotte’s Web.
Hailey McGuire, the 7-year-old niece of Colorado-based photographer Nichole Montanez, is one of the children on that waiting list. Hailey suffers from Dravet Syndrome, the same severe form of epilepsy that causes Charlotte’s seizures. “We’ve said goodbye to her a number of times,” Montanez said. “When she was four, she was placed into a medically induced coma.”
Montanez began volunteering at support groups for families in similar situations. Last August, she launched a photography project, Face of Cannabis, featuring portraits of Zaki, Charlotte and other children who use marijuana to treat their debilitating symptoms.
“I identified with each child as if they were my own,” she said. “They have feelings, they laugh. I want that to be what people see when they look at the project — not the disease or the brokenness, just the child.”
Realm of Caring isn’t the only clinic to successfully treat sick children with medical marijuana. California’s Harborside Health Center, which the Obama administration has been threatening to shut down for years on the grounds that it’s become “too large” of an operation, provides low-THC cannabis tinctures to a number of young patients. Gedde pointed to another program in Michigan and added that a number of small-scale providers are beginning to treat children in states where the plant is legal for medicinal use.
And in states where medical cannabis remains illegal, individuals are fighting for sick children to have safe access to the plant. A coalition of Mormon mothers in Utah recently formed an advocacy group with the support of their conservative state representative. State Rep. Allen Peake, a Republican lawmaker in Georgia, unveiled a bill earlier this month that would legalize cannabis oil, a move inspired by Peake’s visit with a constituent’s daughter who suffers from hundreds of seizures a day. Florida legislators are currently considering a similar measure.
Montanez said she herself was opposed to legalizing medical marijuana until she saw the effect it could have on sick children. She hopes others with similar beliefs will see her photographs.
“My ultimate goal is that people might be open to the possibility that there’s a better way — that cannabis is a medicine,” she said. “Kids across the country and internationally should have access to this medicine.”
Below, take a look at Zaki, Charlotte and many of the other children Montanez has photographed, who are either using marijuana for their symptoms or waiting for access so they can begin treatment.
Maggie, 20 months old
Maggie has been suffering from seizures since she was six weeks old, and has hundreds of seizures on any given day. Her family relocated from Tennessee to Colorado late last year to use a combination of intensive therapy and cannabis oil to treat her symptoms.
Hunter, 7 years old
Hunter suffers from intractable epilepsy and developmental delay. He’s been on numerous medications that have failed to alleviate his seizures and he continues to decline “cognitively, physically and emotionally,” according to his mother. He recently started cannabis treatments in the hopes that cannabidiol can provide relief.
Piper, 2 years old
Piper was born with a rare genetic disorder that causes her to suffer from seizures and has rendered her non-verbal, unable to crawl or walk and visually impaired. She has been on nine medications to try to treat her symptoms, and started taking cannabis oil last October. Since she began taking a low dose of cannabis, her family has begun to see small improvements.
Calvin, 14 years old
Calvin has an extreme form of autism that has rendered him nonverbal. After 22 days of taking cannabis, he has begun using words to communicate. According to his mother, he used to have up to 20 head-beating episodes per day, and has only had one episode total in the three weeks he’s been using cannabis. “I cried everyday for the first week of him using cannabis,” his mother wrote on Montanez’s blog. “We no longer had to pull over and restrain him on our way to therapy.”
Sydni, 9 years old
Sydni suffers from Doose syndrome, which causes her to have up to thousands of seizures each day. She functions at the academic level of a three-year-old and takes nine different medications. Her family recently started her on cannabis oil in the hopes that it will reduce her seizures.
Emily, 4 years old
Emily suffers from a debilitating form of epilepsy that has yet to be diagnosed. Her family recently moved from Indiana to Colorado in the hopes that a cannabis prescription will help ease her seizures.