Health & Human Services

The Other Side of Colorado's Marijuana Tourism: Sick Children

by | April 25, 2014

By Donald Bradley

Otis Reed will soon move to Colorado so he can get marijuana every day.

No hurry. One night last week, he happily chomped on string cheese and broccoli. Well, spit broccoli out anyway, the florets landing on the toy frog in his lap.

Otis is 2. He and little ones like him have become the new face of America's discussion about marijuana. Forget Bill Maher and Willie Nelson for now _ that's old weed thinking.

Now it's about kids who suffer hundreds of seizures every day because of epilepsy and other neurological disorders. A growing number of health professionals, buoyed by new research and positive results, say medical marijuana, specifically an oil extract called Charlotte's Web, can help those children.

The big question is, why do these families have to move to Colorado to get it? Even the national Epilepsy Foundation says the treatment should be available everywhere. It's made in Colorado Springs, but if people bring it home to a non-medical marijuana state, such as Kansas or Missouri, they could be arrested.

Margaret Gedde, a doctor in Colorado Springs, blames people clinging to a decades-old resistance right out of "Reefer Madness." And until change comes, families known as "medical marijuana refugees" are streaming to Colorado.

"As success stories get out and word spreads, they are coming here from everywhere," said Gedde, a pathologist who has encouraged dozens of families to make the move from as far away as Florida. "We see them every day."

That's what Otis' mom and dad are doing. Otis, who turns 3 in June, can't walk or talk. In February, he broke a leg because constant medication weakened his bones.

But he smiles. His life is what he knows.

Kathy and Ryan Reed have tried everything to help him. Various doctors, different hospitals, ketogenic diet, two pages of drugs.

Nothing worked. Then they heard about Charlotte's Web. So the family is leaving Baldwin City, Kan. _ and jobs and family _ in May for Colorado Springs.

"Anybody in our shoes would do the same thing," Ryan Reed said. Through the Internet and social media, the refugees find each other. They exchange stories, compare notes and help with one another's kids. A woman who moved last year from Gladstone with her daughter said she has more than 400 families on a Facebook page.

It could soon be the faces of children such as Otis Reed and June Jessee, a toddler in St. Louis, that legislators will see on large video screens in chambers as laws are challenged in the 29 states that do not allow medical marijuana.

And of course, Charlotte Figi, a little girl with a genetic disorder called Dravet syndrome that causes catastrophic seizures. She was so sick _ her heart stopped twice _ that her parents signed a "do not resuscitate" order.

Then they tried the marijuana oil _ and it worked. She is the Charlotte of Charlotte's Web.

"Marijuana can end the suffering of children with seizures," Gedde said by phone from her office. "Who wants to be against that?" Critics argue that a medical marijuana law is just a steppingstone to statutes allowing recreational use. They say that it would make pot easier for teens to get and that it would lead to harder drugs.

They also point to all the approved drugs that are available. The big "no" comes from the U.S. Food and Drug Administration, which continues to say that marijuana "has a lack of accepted safety for use under medical supervision" and that "no sound scientific studies supported medical use of marijuana."

But the American Medical Association, along with other health organizations, recently called for more research.

Proponents such as the refugee families want people to look at a website called Face of Cannabis, at faceofcannabis.wordpress.com. It shows their children and tells their stories.

Ryan and Kathy Reed think medical marijuana will be legal everywhere in a few years, but they can't wait. Otis needs help now, said Kathy Reed, who works at the University of Kansas.

"It's just unfortunate that we have to pack up and leave our lives to go get medicine that may save my son's life," she said.

These marijuana refugees don't rival in numbers the dream chasers of the California gold rush or the downtrodden who migrated west during the Great Depression.

But they have one thing those earlier seekers lacked. Or, rather, they lack something the earlier ones possessed.

"We don't have a choice," said Matt Jessee, whose 2-year-old daughter, June, suffers daily seizures from epilepsy. "Really, what else can you do when it's your child? If you think it could help, don't you have to go?"

He is wrapping up law school and works for the Bryan Cave legal firm in St. Louis. His wife, Genny, recently testified before a Missouri House committee considering medical marijuana.

Matt Jessee blames federal drug policy that continues to categorize marijuana as a Schedule 1 drug, which means it has no accepted medical use.

He rejects criticism that asks, why try medical marijuana when we don't know whether it will work? He said his family didn't know whether the other medications would work either, and they didn't. One, he said, had a 3 percent chance of working, and a possible side effect was death.

"We can't wait any longer," he said of the family's move to Denver. "Sure, it's a tough move. All our family is here, and we don't know anybody out there. But every day June has seizures delays her development, so we can't wait any longer.

"This is about hope."

(c)2014 The Kansas City Star

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