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(Leah Hogsten | The Salt Lake Tribune) Piper's retinas are dotted with small holes, a marker of her epileptic condition, but she responds to toys with bright lights. Her parents, Tennesseans Annie and Justin Koozer moved to Colorado to obtain a seizure-stopping cannabis extract produced by the Realm of Caring Foundation.
Families migrating to Colorado for a medical marijuana miracle

The waiting list for the cannabis extract includes about 30 kids in Utah whose parents hope to import what they consider an ‘herbal’ remedy.

By kirsten stewart

| The Salt Lake Tribune

First Published Nov 10 2013 01:01 am • Last Updated Mar 03 2014 07:02 pm

Denver » Piper rolls back and forth across a large blanket on the living room floor, windmilling her arms and kicking her legs.

"Who’s a happy girl?" asks her mom, Annie Koozer, kneeling over the 2-year-old with a small, oil-filled syringe. Piper fusses as Annie squirts a tiny amount into the side of her mouth.

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"What do you think about that? That’s not too bad, especially if it makes you feel better," says Annie.

It could take days or weeks before Annie and her husband, Justin Koozer, know whether the medicine controls Piper’s debilitating seizures. But waiting is familiar ground for the young Tennessee family that has tried virtually every pharmaceutical fix available, traveled 1,300 miles to get here and waited more than two months for what may be their best and final hope: cannabis.

The Koozers are part of a migration of families uprooting their lives and moving to Colorado, where the medicinal use of marijuana is permitted. More than medical tourists, they are medical refugees, forced to flee states where cannabis is off limits.

"This is just the first wave," said Margaret Gedde, a Colorado Springs physician with a doctorate from Stanford who prescribes marijuana and has compiled case studies of children using cannabis-infused oil. "These families are going to keep coming as awareness spreads because the results are real."

Gedde has been monitoring 11 children with seizure disorders who are taking the same cannabis extract Piper is receiving, and she will present her findings at the annual meeting of the American Epilepsy Association in December.

Nine of the children have had a 90 to 100 percent reduction in their seizures, she said. The parents of one child aren’t sure the oil has helped, but it hasn’t hurt. And the other had a 50 percent reduction.

"It’s absolutely remarkable," she said.

Medical marijuana is currently legal in 20 states, plus D.C. and Portland, Maine. But Colorado has become the go-to place for an extract from a plant that’s high in cannabidiol (CBD) but low in tetrahydrocannabinol (THC), the psychoactive chemical component of marijuana that creates a high in users.

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Marijuana entrepreneurs and cultivators Joel, Jesse, Jonathan, Jordan, Jared and Josh Stanley call it Charlotte’s Web, named for the Colorado Springs girl who tried it first and went from having 300 seizures a week to about two a month. Videos showing a once-catatonic Charlotte Figi now talking, running on a beach and horseback riding have lured families from far and wide.

The number of children younger than 14 with marijuana "red cards" tripled in the last five months from seven in March to 21 in August, according to the Colorado Department of Health and Environment.

A waiting list the Stanleys keep for their CBD extract numbers about 200 and growing, said Josh Stanley, the oldest of the six brothers running the non-profit Realm of Caring Foundation.

The list includes about 30 kids in Utah whose parents, instead of relocating, are lobbying for permission to import the "herbal" remedy, which they’ve dubbed Alepsia. Since it’s so low in THC, they argue, it meets U.S. agricultural standards for hemp, which is used in products such as clothing and lotions.

Next week they hope to receive the blessing of Utah’s Controlled Substance Advisory Committee, which makes recommendations on the scheduling, or classification, of drugs.

‘My heart is heavy’ » The Koozers believe Piper is the first child with Aicardi syndrome to try Charlotte’s Web.

Aicardi is a rare chromosomal disorder characterized by infantile spasms, or seizures, and the partial or complete absence of a structure in the brain called the corpus callosum.

Doctors discovered Piper was missing the thick band of nerve fibers that divides her cerebrum into left and right hemispheres when she was in the womb, during a 20-week ultrasound.

"We went to find out if we were having a girl or boy ... Ten minutes later we learned there was something wrong with how her brain was developing," Annie wrote on a blog she keeps to update friends and family.

Almost all the cases have been girls. There is no cure; most children die either before the age of 1 or in their early teens.

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