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Hibbing family hopes new medical marijuana law will help daughter’s battle with Dravet syndrome

HIBBING, Minn. -- For Josh and Angie Weaver of Hibbing, no day looms bigger on their calendar than July 1, 2015. "We are counting the days," Angie Weaver wrote in an email. That's because July 1 is the day Minnesota's medical marijuana law takes ...

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Amelia Weaver, 8, has a catastrophic form of epilepsy known as Dravet syndrome, and her parents are hopeful that Minnesota's new medical marijuana legislation will lead to a more effective treatment for her. Submitted photo

 

 

HIBBING, Minn. -- For Josh and Angie Weaver of Hibbing, no day looms bigger on their calendar than July 1, 2015.

“We are counting the days,” Angie Weaver wrote in an email.

That’s because July 1 is the day Minnesota’s medical marijuana law takes effect and with it - the Weavers hope - a new and better chapter in their daughter’s battle with Dravet syndrome.

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When interviewed for a profile story last January, the prospects of medical marijuana legislation becoming law in Minnesota looked slim, at least for 2014. The bill was authored by the legislator who represents them, Carly Melin, DFL-Hibbing, and had some support on both sides of the aisle.

But law enforcement groups strongly opposed any sort of legalization, and Gov. Mark Dayton said he wouldn’t sign a bill without law enforcement support.

The Weavers were among a handful of families at the center of an effort to change hearts and minds about the issue. Their inspiration was daughter Amelia, now 8, a dark-haired beauty with intelligent brown eyes whose development was reversed by Dravet, a catastrophic form of epilepsy.

Amelia could walk and say her ABCs and count to 20 at age 2½, but that was when the daily seizures began that are characteristic of Dravet. She’s now unable to communicate verbally, can’t handle a fork or spoon and walks aimlessly and hyperactively with frequent falls.

A year ago, Amelia was experiencing between 20 and 30 “drop” seizures - a brief seizure in which muscle control is lost and the individual typically falls to the ground - per day.

That has since gotten worse, Weaver wrote. Her daughter now suffers between 30 and 50 drop seizures daily and as many as 10 grand mal seizures - with loss of consciousness and violent muscle contractions.

Most epilepsy medications don’t work with Dravet syndrome, the Weavers say, and those that sometimes do haven’t been effective for Amelia.

They’ve pinned their hopes on medical marijuana. Although it hasn’t been well-studied, there is anecdotal evidence that a form of medical marijuana produced in Colorado has brought about marked improvement in the lives of some children with Dravet.

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The Weavers had considered a short-term stay in Colorado while waiting for the Minnesota law to take effect. But they’ve chosen to remain in Hibbing.

“When Minnesota passed the medical cannabis law, our family did not have to make the move to Colorado,” Weaver wrote. “During this year we’ve been working with Amelia’s neurologist to provide the best care until cannabis is available (in Minnesota).”

The Minnesota Department of Health in December selected two companies to manufacture and distribute medical marijuana in the state. One, LeafLine Labs, plans to have a distributor in Hibbing no later than July 1, 2016. Until that opens, the Weavers will travel to the Twin Cities as needed to get their daughter’s supplies, Weaver wrote.

Amelia loves music, toys, little sister Penelope (4) and Cinderella, her mother wrote. In May, the Make A Wish Foundation made it possible for Amelia to meet Cinderella by providing a family trip to Disney World in Florida.

The Weavers found themselves in the unfamiliar glare of the media spotlight during the campaign to pass the legislation. The effort was an emotional roller-coaster, she wrote.

“I will be very happy if we never have to be involved in politics again,” Weaver wrote.

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Josh and Angie Weaver pause at Disney World in Orlando, Fla., with children Penelope, 4, and Amelia, 8. The Make A Wish Foundation provided the trip for the Hibbing family in May because Amelia, who has a catastrophic form of epilepsy known as Dravet syndrome, wanted to meet Cinderella. Submitted photo

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