David Cook: Medical marijuana provides answer to Ooltewah family's prayers

David Cook: Medical marijuana provides answer to Ooltewah family's prayers

November 15th, 2013 by David Cook in Opinion Columns

David Cook

Photo by Ashlee Culverhouse/Times Free Press.

POLL: Should medical marijuana be legalized?

To understand why the Koozer family - Justin, Annie and 2-year-old Piper - left all their friends and church family in Ooltewah to move across the country to Denver, where they knew no one, try this: Start counting from zero all the way to 2,000. Or go walk two miles. Or watch the nightly news.

It should take you about 30 minutes.

During that time, imagine your heart cracking in half as you watch -- helplessly -- as your firstborn child shakes and convulses, a victim of her own private earthquake.

Thirty minutes.

That's how long Piper's seizures were lasting.

"She would have 250 to 300 spasms in a six-hour period," said Justin.

That was two springtimes ago, when Piper was 6 months old. Doctors diagnosed her with a rare form of epilepsy known as Aicardi syndrome. There is no cure, and seizures are vicious: clusters of spasms, each lasting one or two seconds, are followed by a pause, then another burst of spasms. Pause. Spasm. Pause. Spasm.

The Koozers and their doctors tried this drug, that drug. A new diet. More drugs. Some helped, others didn't. Some turned her blood acidic, others made her stop sleeping. When Piper took phenobarbital, she stopped smiling.

"Like a zombie," said Justin.

Then the Koozers heard about one new drug that was working wonders for kids with epilepsy. One doctor was reporting a nearly 100 percent reduction in seizures.

The drug is in wide use in Colorado. But here in Tennessee, using it is a crime.

So the Koozers moved to Denver, with hopes of getting pediatric doses of medical marijuana.

•••

Medical marijuana is legal in 20 states and the District of Columbia. Yet Colorado is seeing a special migration of families -- the Salt Lake Tribune called them "medical refugees" -- in search of help for their afflicted children.

There, doctors are prescribing a cannabis that's more like hemp than marijuana: high in the medicinal chemical called cannabidiol yet low in tetrahydrocannabinol, or THC, the stuff that gets you high.

Parents keep hearing about this one girl, Charlotte Figi, a 6-year-old epileptic who was having up to 300 seizures a week. Her family got in touch with the Colorado-based nonprofit Realm of Caring, which was growing this low-THC strain of marijuana they'd later, famously, call Charlotte's Web.

It worked. Charlotte went from 300 seizures a week to two, maybe three, a month. Photos from CNN show Charlotte laughing, smiling, playing with a toy truck.

"That got our interest," said Justin.

•••

Then came a string of unforgettable days in June.

Justin was traveling out of town for work. Annie just learned they were pregnant with their second child. Piper's seizures had been nightmarish.

Annie told her husband: Let's go to Colorado. Right now.

They hatched a plan: Annie and Piper would move to Denver, establish residency, make appointments with two doctors, then get their "red card," which is like a license for Piper to receive medical marijuana.

"You start out at a very small level," said Justin. "Half a milligram per pound of body weight."

The folks at Realm of Caring -- it's run by six brothers who give doses away to parents who can't afford them -- mixed together a tincture of Charlotte's Web that is oil-based and administered by mouth three times a day.

On Oct. 24, Piper -- the girl who was once having 300 spasms a day -- had her first dose.

"These past three days, she's had two to three single spasms per day," said Justin on Wednesday. "We've never seen days like this."

•••

Could medical cannabis be legalized here?

If your first reaction is skepticism and dismissal, then know this: Justin Koozer used to feel the same way.

"I viewed it as a smoke screen for people to smoke marijuana recreationally. I never considered it as something that could work for all these different diseases," he said.

That's why the Koozers are speaking out, hoping a paradigm shift will spread across Tennessee as citizens, like cleaning a pair of smudgy glasses, begin to see this issue differently.

"I'm telling people to keep an open mind," Justin said.

Remember: the Koozers aren't hippies looking for a back-door way to get high. They're churchgoing, hard-working, good-hearted parents. (Justin said the Christway congregation in Ooltewah was a life saver to their family).

They remain cautious, yet oh-God-please-let-it-work-hopeful. Denver is becoming more and more like home. Justin bought some new skis. They're going to Breckenridge for Thanksgiving. And their little girl keeps getting better and better.

Here's what happened on Halloween:

"She was smiling, laughing," Justin said, "It's such an incredible feeling to see her do that. She'd laugh when I tickle her. Her eyes lit up. It was almost like a fog that was slowly going away."

In Tennessee, Rep. Sherry Jones, D-Nashville, is behind a bill that would legalize medical marijuana, her spokeswoman said Thursday.

If Piper were your child, how would you vote?

Contact David Cook at dcook@timesfreepress.com or 423-757-6329. Follow him on Facebook and Twitter at DavidCookTFP.