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Fed up with Tennessee's foot-dragging on medical marijuana, families with seriously ill children are departing for Colorado

The Grass Is Greener

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A For Rent sign is staked in the front yard of Penn and Nicole Mattison's home off White Bridge Road. Mountains of boxes clutter each room, and the walls are stripped bare of family photos. In two days, the Mattisons will move their three children — Neal, 10, Sam, 7, and Millie, 22 months — to Colorado Springs, Colo.

They have yet to find a place to live.

Despite the general chaos, however, they appear surprisingly calm. So, for the moment, does Millie. The infant girl sleeps on the couch surrounded by a spiderweb of tubes, her mother tenderly stroking her back.

Then something changes. As the girl lies on her side, her arm goes rigid and begins to curl outward. Her entire body tenses. Even though she makes no sound, her face clenches and contorts.

Nicole Mattison just holds the trembling girl, soothing her. Gradually Millie's face and limbs relax. The time that elapses, from first tremor to resumed rest, is 15 seconds. On a good day, like today, she might have five such seizures.

On a bad day, she might have 200.

Millie Mattison, not yet 2 years old, suffers from infantile spasms. That's why the Mattisons don't feel they have the luxury of time. They're making the move to Colorado, which is among the 20 states and the District of Columbia with legalized medical marijuana, so they can obtain the drug for Millie.

At press time, Tennessee stands as one of six states with legislation pending to legalize medical marijuana. On Jan. 7, state Rep. Sherry Jones (D-Nashville) filed HB 1385, also known as the Koozer-Kuhn Medical Cannabis Act. The bill was originally drafted in 2010 by Bernie Ellis, a policy expert and activist who was busted for growing medical marijuana after drug agents raided his Santa Fe, Tenn., farm in 2002.

The names on HB 1385 were chosen symbolically. Piper Koozer, 2, suffers seizures resulting from the rare genetic disorder Aicardi syndrome. Her family recently relocated from Knoxville to Denver to secure her treatment. The late Jeanne Kuhn found relief in medical marijuana before she died of cancer in 1996. The bill that bears their names would legalize marijuana for medicinal purposes only, establishing regulated dispensaries for qualifying patients with specific conditions — including cancer, post-traumatic stress disorder, AIDS, Alzheimer's disease and multiple sclerosis — who are enrolled in a safe access program.

Kuhn's widower Paul Kuhn, a Nashville investment adviser and former Navy officer, is the past national chairman of the lobbying group National Organization for the Reform of Marijuana Laws. Kuhn, who continues to serve on NORML's board, is optimistic about HB 1385.

"It will pass," Kuhn states, with a confidence many sympathetic voters don't share. "We're very close to the tipping point. There will be, this year, probably five to eight additional states that pass. So do we want Tennessee to be holding up the rear? It doesn't do our state image any good to be the laggers in a very progressive movement."

HB 1385 is currently in the House, and while it has about a dozen Democratic supporters, a Republican must publicly stand up and sponsor the bill for it to progress.

"We definitely have Republican votes, but we need to get a sponsor out there, particularly in the Senate," Kuhn says. "There are three physicians and two pharmacists in the Senate, so we hope they will be supporters."

But it doesn't look like Tennessee is going to be blazing anything, let alone a trail, on medical marijuana anytime soon.

In 2012, the Tennessee House health subcommittee voted in favor of an earlier version of HB 1385, but the measure died a week later. Last week, current House Health Committee Chairman Bob Ramsey (R-Maryville) said the committee is unlikely to support HB 1385 in light of the state's massive prescription drug problem and opposition from law enforcement and the Tennessee Medical Association.

"With the current atmosphere of the House, we will discuss that, but it probably won't pass," Ramsey said. "I haven't seen a lot of interest in passing it."

Which is why Penn and Nicole Mattison view each day spent in Nashville as another day Millie can't get medication she needs. They have to consider their daughter's quality of life — which, according to one of her doctors, currently offers little chance of walking, talking, or even sitting up. She has been on some form of drug since her seizures started at 3 months old.

"I'm not sure, at this point, what's working and what's not," Penn admits. "We still have really bad days. We appreciate the good days."

"We appreciate the bad days," Nicole interjects. "We'd rather have the bad days than no days."

Millie sees a neurologist at the Neurometabolic Clinic at the Cincinnati Children's Hospital every three months. Between visits to Cincinnati, Millie frequents the emergency room at Vanderbilt. But the cause of her seizures is still unknown.

She's endured intubations, blood transfusions, spinal taps, MRIs, CAT scans, genetic testing and stints in the pediatric intensive care unit, one due to kidney shutdown from an anti-seizure ketogenic diet. She's been on as many as 11 medications at one time and relies upon a feeding tube. Her current medication, Sabril, leaves her lethargic and has severe potential side effects, including blindness.

"One study we looked at said that if two anti-epileptics don't work, there's a 10 percent chance that any of them will work," Penn says. "If four don't work, there's a 0.8 percent chance. We've been on six. Nothing has really helped that much. She sleeps 20, 22 hours a day — there's no way she can build any muscle tone or development skills.

"One thing we've noticed as she's gotten older, is that the seizures are getting more intense," Penn continues, in a halting voice. "Last night she had the longest one I'd ever seen, maybe two minutes, and it was incredibly intense. It was heartbreaking. It's pretty hard. ... As she gets older, she seems to cry out a little bit more."

The Mattisons have diligently researched alternative treatments, including holistic remedies, and regularly communicate with parents of children with similar disorders. Last summer, Penn caught part of CNN chief medical correspondent Dr. Sanjay Gupta's documentary Weed, in which the physician famously apologized for and retracted his previous opposition to medical marijuana.

"I asked one of the attendings [at Vanderbilt] what he thought of it, and he said, 'There's a large percent that it can help tremendously, there's a smaller chance that it does nothing at all, but there are no drawbacks to it,' " Nicole says. "He said, 'I would recommend it. I would go for it.' We started researching, and everything we saw was so positive and hopeful. And at that point, we'd been told that there wasn't much hope."

In September, the Mattisons traveled to Cincinnati for an appointment with their neurologist, including an EEG that showed no improvement. Penn and Nicole asked about medical marijuana as a treatment option.

"And she said, exactly: 'I have not studied it, I cannot write a prescription, it is illegal here, but I encourage you to do what you need for your daughter,' " Nicole says.

The neurologist's response may have been vague, but for the Mattisons, the answer was clear. In November, Nicole reached out to the local chapter of NORML. After confirming that there was no way to legally obtain medical marijuana within the state of Tennessee — and knowing that they did not want to pursue treatment here illegally — they booked flights to Colorado the week before Christmas. They began the process of establishing residency and applying for a red card, the official identification card required for legal access to medical marijuana. Penn sold his landscape business, and the family started to make arrangements to leave.

If this all sounds swift, stressful and hectic, it is. They're excited about the prospect of a new treatment that could improve their daughter's quality of life — and their family's quality of life — and the logistics of the move are a minor inconvenience in comparison. Nicole, who left her job when Millie was 6 months old, home-schools Neal and Sam, although she and Penn want to enroll the boys in school in Colorado.

"There were some dark days, and we thought, if Millie's days are numbered, we want the boys to be here with us and experience her," Nicole says of the decision to home-school the boys. "A lot of kids don't have the chance to see this, and I don't think they have the compassion that our boys have, and the understanding of individuality."

"We hope to enroll them in school there so they can meet other children," Penn says. "We work incredibly hard to give them a sense of normality and to keep their lives as peaceful as possible. They understand what's going on — they know about the marijuana. We want them to be as educated as possible about where, why, and what we're doing."

The Mattisons left Nashville Jan. 15, and plan to initially treat Millie with THCA — a constituent of cannabis that has anti-inflammatory, anti-spasmodic and neuroprotective elements but lacks the psychoactive effects found in THC — immediately upon their arrival in Colorado Springs. They're on a waiting list at Realm of Caring, which produces a strain of medical marijuana called Charlotte's Web. It's named after Charlotte Figi, a 6-year-old with a severe type of epilepsy called Dravet syndrome, who was featured in Weed.

"They're seeing decreases in seizure activities — days, even months without seizures," Nicole says. "On top of seizure control, you're seeing a tremendous increase in alertness, cognitive skills, behavioral skills and communication skills."

Since Figi started treatment with an oil extraction of Charlotte's Web, she went from experiencing 300 seizures a week to two to three per month. Figi, who is now pharmaceutical free, previously relied upon a feeding tube, but now can eat and drink on her own, walk and talk — things her parents never thought she would do.

Piper Koozer started on Charlotte's Web on Oct. 24 (she still takes her prescribed medication), and her father Justin reports that they've seen a reduction in the frequency and severity of her seizures. Nicole says she knows of five other Tennessee families who have moved to Colorado since October to treat their children with medical marijuana, rather than wait to see how it plays out on the Hill.

Despite Kuhn's optimism that the bill will eventually pass, legislators don't appear ready to make a move — at least not in an election year.

"I'm sensitive to the fact that there [are] some uses, medical uses, for marijuana," House Speaker Beth Harwell says. "I don't think that this state is ready for that movement yet. I think it's a wonderful opportunity for us to see what actually happens in the state of Colorado. It's one of the reasons I believe in states' rights, it's a laboratory for change.

"We're going to watch what happens in Colorado and see if it really works, and works well there, or if they end up with more problems than they actually solve. But I don't foresee that moving in the state of Tennessee."

In the meantime, if the laws won't move, families will.

Andrea Zelinski contributed reporting to this story. Next week: The political climate in Tennessee for medical marijuana.

Penn Mattison (R) and friends pack up the Mattisons' house for their move to Colorado Springs - PHOTO: MICHAEL W. BUNCH
  • Photo: Michael W. Bunch
  • Penn Mattison (R) and friends pack up the Mattisons' house for their move to Colorado Springs
Millie Mattison - PHOTO: MICHAEL W. BUNCH
  • Photo: Michael W. Bunch
  • Millie Mattison
Nicole and Penn Mattison give millie her medication - PHOTO: MICHAEL W. BUNCH
  • Photo: Michael W. Bunch
  • Nicole and Penn Mattison give millie her medication
Neal (left) and Sam play with Millie - PHOTO: MICHAEL W. BUNCH
  • Photo: Michael W. Bunch
  • Neal (left) and Sam play with Millie
PHOTO: MICHAEL W. BUNCH
  • Photo: Michael W. Bunch
PHOTO: MICHAEL W. BUNCH
  • Photo: Michael W. Bunch
PHOTO: MICHAEL W. BUNCH
  • Photo: Michael W. Bunch

Email editor@nashvillescene.com.

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