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Published January 19, 2014, 09:12 AM

Minn. family hopes for legalization of medical marijuana, the 'best hope' for their daughter

HIBBING, Minn. – The first time Amelia Weaver had a seizure, at 18 months, doctors said it was likely the consequence of a high fever.

By: Forum News Service, INFORUM, WDAY

HIBBING, Minn. – The first time Amelia Weaver had a seizure, at 18 months, doctors said it was likely the consequence of a high fever.

Keep an eye on her when she has a fever, doctors told the Hibbing infant’s parents – Angie and Josh Weaver – but it’s probably nothing to worry about.

Amelia didn’t have her next seizure until a year later. After that, she had so many that her mom stopped counting after she got to a thousand.

Now, age 7, Amelia has between 20 and 30 seizures a day, every day, according to her parents.

Once a normal child who could walk and say her ABCs and count to 20 at age 2½, Amelia has lost most of that. Unable to communicate verbally, she makes a cooing sound as her parents hold her or read to her and little sister Penelope, 3. She can feed herself finger food, but can’t handle a fork or spoon.

The dark-haired little girl is able to walk, but does so aimlessly and hyperactively. Angie and Josh’s modest ranch home is sparsely furnished because of Amelia, and they watch her closely. Still, when Amelia isn’t placed in her specially designed stroller or being held, she wears a helmet to cushion her many falls, some of which are caused by one type of seizure.

Amelia has Dravet syndrome, a rare and catastrophic form of epilepsy that attacks young children. Most anti-epileptic medicines aren’t recommended for Dravet syndrome; the few that are haven’t helped Amelia.

“We have all but exhausted our options,” said Angie Weaver, 32.

But the Weavers have a glimmer of hope.

They’ve learned about it through TV shows and newspaper articles and especially through the online community of parents who have children with the same condition. Some of those parents tell of a treatment that has made an enormous difference in their children, allowing them to bring their seizures under control and start to regain lost functions.

But the treatment is illegal in Minnesota. It’s a medical form of marijuana, taken as a pill or in an oil solution.

Amelia’s story, and those of people suffering from cancer, glaucoma, debilitating pain and other conditions, led state Rep. Carly Melin, DFL-Hibbing, to author legislation that would legalize marijuana for medical uses in Minnesota.

Melin and other proponents say the bill would give doctors a legitimate tool for patients with certain conditions who don’t respond to other treatments, and that it minimizes side effects caused by other drugs.

Opponents – including law enforcement organizations – argue that legalization would open the door to more abuse of a dangerous drug.

“I say this not only as a police chief but as a dad and a community member, I really believe this is the wrong way to go,” Duluth Police Chief Gordon Ramsay said.

Vetoed in 2009

The two sides draw different lessons from the 20 states, plus the District of Columbia, that already have legalized marijuana for medical purposes. (Two of those, Colorado and Washington, have legalized recreational marijuana use as well.) In somestates, legalization goes back more than a decade.

The Minnesota Legislature has approved medical marijuana legislation before – in 2009, when a bill authored by state Rep. Tom Huntley, DFL-Duluth, passed in both houses only to be vetoed by Republican Gov. Tim Pawlenty.

It’s possible this year’s bill could face the same fate, this time from Democratic Gov. Mark Dayton.

Spokesman Matt Swenson said Dayton would sign a medical marijuana bill, but only if it had broad law enforcement support.

Such support seems doubtful. The Minnesota Law Enforcement Coalition, representing five statewide organizations, is as ardently opposed this year as it was in 2009. Among the groups is the Minnesota Sheriffs Association, whose executive director is Jim Franklin. Asked if there were any version of a medical marijuana bill his group could support, Franklin responded: No.

Treatment for acne?

Opposition doesn’t come solely from law enforcement. The American Medical Association calls for research and development of cannabinoid-based medicines, spokeswoman Kelly Jakubek said, but it doesn’t endorse legalization or state-based medical marijuana programs.

Minnesota’s former drug policy director is also opposed.

“In some states with medical marijuana, such as California, there are over 400 conditions for which one can receive a prescription for marijuana, ranging from cancers and other diseases to headaches and hangnails and acne,” said Carol Falkowski, now director of Drug Abuse Dialogues, a Minnesota-based business that delivers educational training workshops about drug abuse.

But the Minnesota Nurses Association has supported medical marijuana bills, spokesman Rick Fuentes said, “because our nurses have an ethical obligation to advocate on behalf of their patients.”

And the Minnesota law would be much more restrictive than the laws in some other states, said Heather Azzi, political director of the pro-legalization group Minesotans for Compassionate Care, strictly limiting the conditions for which marijuana use would be allowed.

The law enforcement coalition disagrees, comparing one of those conditions, “severe, debilitating pain,” to the “serious pain” listed under the Colorado law. It says 94 percent of those applying for medical use cards in that state do so for “serious pain.”

‘Zero quality of life’

The Weavers say they wish more studies were available, but they’re in a desperate situation.

“She has zero quality of life right now, and she is suffering every day,” Angie Weaver said.

When considering the uncertainty of the future of legalized medical marijuana, they balance it with the present reality of the drugs Amelia already is taking.

“Let me tell you the side effects of her medications right now,” Angie Weaver said. “Death. Blindness. Liver damage. … Anticonvulsant medications are pretty much some of the strongest medications that you can give with the strongest side effects.”

The Weavers were dubious when first told about the possibility of treating Dravet syndrome with medical marijuana. But then one of Josh Weaver’s colleagues at Hibbing Community College told him about Charlotte Figi. Charlotte’s mother, Paige Figi, said Charlotte had been diagnosed at 2½ with Dravet syndrome, and every possible FDA-approved medication had been tried.

Charlotte’s symptoms were, if anything, even more drastic than Amelia’s.

In the first seven days after taking medical marijuana, Charlotte was seizure-free, her mother said. Over the next nine months, she went from having 300 seizures a week to zero or one.

“The little girl looks like Amelia; the story sounds the same,” Josh Weaver said. “It’s like watching our life, happening somewhere else.”

The difference is that Charlotte Figi’s somewhere else is Colorado. The medical marijuana compound she takes, cultivated to be extremely low in the THC that gives marijuana its psychoactive effects, is grown there.

The Weavers don’t want to move to Colorado.

Josh Weaver, 33, likes his job in the information technology department at the community college, and the health insurance is good, they said. Both grew up in Hibbing, and their family, friends, and their church are here. Having a child who has multiple seizures means most babysitting options aren’t available, but they can call on their parents.

In Colorado, all of that would be gone.

But if the medical marijuana bill isn’t passed and signed by the governor this year, the Weavers say they’ll move to Colorado.

“I realize she’ll never live a normal life, like her sister,” Josh Weaver said of Amelia.

His hope from medical marijuana, he said, is just to get “to the point where she can sit down and read a book with me, or we can go to the park and play or she doesn’t have to walk around with that helmet on. Just something that would allow her to progress.”

“We just want safe, legal access to a medicine that can help our daughter,” added Angie Weaver.

‘It goes too far’

Melin said she’s hopeful about the bill getting through the Legislature this year. It has the maximum number of co-sponsors in both the House and the Senate, and sponsors include Republicans as well as Democrats.

She’s less optimistic about law enforcement and the governor. Dayton told The Associated Press late in December that he wanted to see more collaboration between the bill’s proponents and the state’s law groups. Because of that, Melin, Schoen and state Sen. Scott Dibble sought another meeting with law enforcement.

The response from Dave Pecchia, the coalition’s chairman, suggested Jan. 20 as a possible meeting time, but added that such a meeting would be pointless.

“There are really no provisions of the bill that we can support, so a review of the bill seems unproductive,” Pecchia wrote Melin on Jan. 8.

Ramsay said he could support some way to provide the medication the Weavers say they need for Amelia. But Melin’s bill goes far beyond that, he said.

“In their bill, if you can grow your own? No,” Ramsay said. “It goes too far. Way too far.”

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