Meet The Children Who Rely On Marijuana To Survive

01/31/2014 12:29 pm ET | Updated Jun 16, 2014

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
    Nichole Montanez
  • 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
    Nichole Montanez
  • 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
    Nichole Montanez
  • 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
    Nichole Montanez
  • 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
    Nichole Montanez
  • 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
    Nichole Montanez
  • 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.
  • Jordan, 18 years old
    Nichole Montanez
  • Jordan was diagnosed with Dravet syndrome when she was six months old and has suffered from seizures for her entire life. On her worst days, she's unable to eat, drink or function. Her family recently relocated from Cleveland to Colorado to try cannabis treatments.
  • Tyler, 11 years old
    Nichole Montanez
  • Tyler has a rare, drug-resistant form of epilepsy called Lennox-Gastaut Syndrome. He has spent months living in the hospital and has been placed in two medically induced comas. He began taking a low dose of cannabis in October and his family has begun to see "small victories."
  • Kennedee, 2 years old
    Nichole Montanez
  • Kennedee was born with Walker-Warburg Syndrome, a severe and rare form of muscular dystrophy that claimed her older sister's life when she was just two months old. When Kennedee was born, she was only given a few months to live. Since starting her cannabis treatment, "we have seen a personality we didn't know she had," her mother wrote on Montanez's blog.
  • Charlie, 6 years old
    Nichole Montanez
  • Charlie suffers from Dravet Syndrome and has seizures in the middle of the night, every night. His family hopes his use of cannabis oil will make him able to communicate and reduce his dependence on other drugs.
  • Cora, 6 years old
    Nichole Montanez
  • Cora was born with a rare multiple-malformation syndrome that causes her to have body and head overgrowth and various abnormalities of her brain, limbs and vascular system. She also suffers from dozens of seizures a day, has undergone multiple surgeries and uses a head switch to communicate. Her parents are beginning to explore cannabis treatments as a means for relief.
  • KC, 9 years old
    Nichole Montanez
  • KC has suffered from multiple daily seizures since he was three years old and has yet to respond to any treatments. After two weeks using cannabis, he began exhibiting progress. "A boy who would previously wobble and stumble as he walked was now running up hiking trails and jumping into his dad's arms," his mother wrote on Montanez's blog. "He has even been cracking jokes!"
  • Charlotte, 7 years old
    Nichole Montanez
  • Charlotte used to suffer from more than 40 seizures per day, and now, according to her mother, "her wheelchair and seizure helmet are in storage collecting dust." Charlotte was the first child in Colorado to be treated with cannabis oil, and her story inspired the name "Charlotte's Web," which is the high-cannabidiol, low-THC strain used to treat other children with similar conditions.
  • Zaki, 10 years old
    Nichole Montanez
  • Since he was just a few months old, Zaki suffered from up to thousands of seizures per day. He has been seizure-free since he started taking cannabis oil more than a year ago.

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