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Medicine for Maitri

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Her mom calls her Wonder Girl, paving the way for other kids like her. Maitri Galloway-Melichar, 10, has intractable epilepsy and medications can't control her seizures. The South Burlington child tried more than a dozen prescription drugs with limited success.

Seizures make her chin quiver and her limbs hard to control. Maitri calls this "the wobbles." It's something that happens 15-20 times a day. Her mom, Annie Galloway, was losing hope when she met Paige Figi. The two bonded over their kids' conditions.

"I was wishing for no more suffering because we had nothing else to try," Paige said.

Paige's daughter, Charlotte, was diagnosed with Dravet syndrome, a rare, debilitating form of epilepsy. By 5, Charlotte regressed to a newborn; she couldn't walk, talk or eat on her own. That is until Charlotte's parents traded her traditional seizure meds for a cannabis oil extracted from pot plants in Colorado.

"She looked me in the eye and she was there again. And she started talking and then she started walking," Paige said.

A few months on the oral solution and Charlotte's seizures virtually disappeared. She went from 300 a week to just two. Charlotte's remarkable recovery sent Maitri's mom on a mission.

"It's a life-changer," Annie said. "When this kind of illness affects your family, it's like nothing you can imagine."

Annie updated us via Skype. Nearly 2,000 miles from home, she says her daughter is healing, thanks to a strain of pot plants growing in Colorado Springs.

"The scientific and medical communities need to understand more about this," Joel Stanley said.

Joel Stanley and his brothers founded the Realm of Caring Foundation, a nonprofit cultivating a strain of marijuana rich in cannabidiols or CBDs, the non-psychoactive ingredient thought to reduce brain excitability through alteration of neurotransmitters. The plant is also low in THC. It won't get you high. So the brothers originally called it Hippies' Disappointment. But after Charlotte's success it was renamed Charlotte's Web.

Reporter Jennifer Reading: Is it a viable treatment?

Dr. Gregory Holmes: I think it could certainly be a viable treatment... I'd love to think this is going to be the miracle drug, but I doubt that. But I do think it's probably going to help some people.

Dr. Gregory Holmes is a pediatric neurologist at Fletcher Allen Health Care in Burlington. He says about 2 percent of Vermont kids suffer from epilepsy. He treats many of them, including Maitri.

"Many of the drugs we do use in the children really have toxic side effects and so the parents just hate giving them the medications that are often not effective," Holmes said.

Maitri's meds caused frequent illness, weight fluctuation, agitation, anxiety and depression. Some even brought on more seizures.

"When you have a child who's having seizures every day and their development is affected, it's such a heart-wrenching thing to have to go through and have to witness," Annie said.

In January, Maitri got her first dose of Charlotte's Web. It costs parents about $300 a month based on the amount of CBD in the oil. They pick up it at medical marijuana dispensaries and administer it at home. Maitri needs less than a teaspoon a day. Her mom says it has cut her seizures by 80 percent.

"The reality of it is incredible," Annie said. "I mean she's reading more. She seems a little bit more at ease and able to access language. So all of that is just very hopeful."

But there's a problem. Maitri and her mom can't leave Colorado. The plant, seeds and oil behind Charlotte's Web can't cross state lines.

Jennifer Reading: We have medical marijuana dispensaries here in Vermont. Why can't Vermont parents get Charlotte's Web here?

Virginia Renfrew: In order to bring it to Vermont, you would be breaking federal law.

And Annie could be charged with drug trafficking. So, she's joined a growing population of parents who call themselves medical marijuana refugees-- stuck in Colorado, burning their savings and depending on fundraisers to live while they wait for laws to change.

"I think it will be quite a hurdle to change that law," Renfrew said.

Renfrew has been a medical marijuana lobbyist since the 1990s. She says the federal government does not recognize pot as having any medical value. But lawmakers in a dozen states are considering proposals to allow a version of Charlotte's Web to be produced or sold legally. Vermont is not one of them. But dispensaries here are trying to grow their own strain of the therapeutic oil. None have mastered the magic THC to CBD ratio... yet.

Jennifer Reading: What do you say to a parent who comes to you and says should I try this for my child?

Dr. Gregory Holmes: At this point, I'm very cautious. But I do say I think you should if we can get the right compound for you.

Tucked inside the recently passed farm bill is an amendment that allows colleges and universities like UVM to study hemp products similar to Charlotte's Web. That's exactly what Holmes intends to do.

"I do think it's safe and I do think it's worth trying," he said.

Anecdotally, Holmes says the treatment is working, but calls for more scientific testing in a broader population.

"I'm working to try to get the drug," Holmes said. "There's a company in the UK that is making a natural compound that's very similar to the Charlotte's Web product."

In the meantime, Maitri's mom is putting her daughter's health in the hands of lawmakers, arguing her ZIP code shouldn't determine the little girl's ability to get well.

"You know I love being out here, but it's not our family," Annie said. "It's not our home. It's an incredible community, but we would like to be in Vermont."

There are currently 179 kids being treated with Charlotte's Web out in Colorado. More than 3,500 more are on the waiting list for treatment.

The Epilepsy Foundation has come out in support of Charlotte's Web, calling for more clinical trials into the CBD oil.

Dr. Holmes mentioned trying to study a compound similar to Charlotte's Web here in Vermont. The company working on that similar treatment is GW Pharmaceuticals. Holmes says the company has done considerable research into the benefits of cannabidiol oil and it's already conducting studies with Dravet syndrome patients in New York and San Francisco. But Holmes is still in the process of trying to start his own study at UVM off the ground.

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