Special Report: Amelia's Fight

Posted at: 05/05/2014 1:05 PM
Updated at: 05/06/2014 8:11 AM
By: Brittany Falkers

A push to legalize medical marijuana in Minnesota has been a hot button issue at the State Capitol this session.  The original bill, authored by Carly Melin, DFL-Hibbing, has made several changes as it makes its way through the legislature.  However, for one Northland family the bill is much more than a political debate.  The outcome could mean big life changes for their daughter Amelia.

Imagine watching your child suffer thirty to fifty seizures a day.  That's the reality for Josh and Angie Weaver. 

"You want to do anything you can to stop it," Angie said.  "What Amelia has gone through, her suffering no child, no one should have to go through that."

Their seven-year-old daughter Amelia suffers from Dravet syndrome. It is a rare and debilitating form of epilepsy that severely affects her quality of life.  Mom, Angie, says she feels helpless when Amelia is suffering a seizure, because little can be done to comfort her young daughter.

Amelia starts almost every day with a seizure, Angie said.  The mornings typically begin with a grand mal seizure.  This type of seizure, also known as a tonic-clonic seizure, features a loss of consciousness and violent muscle contractions. It's the type of seizure most people picture when they think about seizures in general, according to the Mayo Clinic.

"Those are one to two minutes long.  Those are scary.  Her body convulses and she turns blue," Angie said. "Yeah, those are scary."

Amelia also suffers atonic seizures, also called drop attacks or drop seizures.  Her muscles will suddenly loose strength.  Sometimes Amelia's head will suddenly drop to her chest.  Other times, her entire body will fall violently to the ground - making it dangerous to walk on her own.

"It's not like a fall, like most people think you fall and kind of trip yourself.  I mean it looks like the life leaves her and she does a head dive into the ground," Angie said.

Most kids Amelia's age are developing, going to school and learning new things. But Angie says Dravet syndrome is actually sending Amelia backwards.  Medications have not been able to control the seizures and simple tasks, such as feeding herself, are impossible.

"We've tried what's out there.  We've actually gotten to the point where we're retrying a lot of medications that she's already tried," Angie said. 

Her dad, Josh, says it's all made life much different for Amelia and little sister Penelope, but no less filled with love and laughter.  The girls love to watch movies and be read to.  They especially enjoy making trips to the Great Lakes Aquarium in Duluth.

"We don't do a lot of activities that we used to do, or that maybe we would do.  Amelia is limited in her stamina," he said.  "But, having said that, we continue to do the fun things that we can do."

The road for the Weavers has been a long one.  Getting the diagnosis of Dravet syndrome took years to come to light and it wasn't the diagnosis the family was hoping for.

"It was not easy to find out what was wrong," Josh said.

Amelia's seizures started when she was just 18-months-old.  The seizures continued and by four Amelia had lost the ability to speak.  Angie says she continues to hold onto hope that she'll get to hear her little girl speak again.

"It would be the best day of my life if I could hear Amelia say mama again," she said.

It wasn't until Amelia was six-year-old that she was finally diagnosed with Dravet syndrome, but that didn't make the situation easier.  It has been an uphill battle from there.

"They say when you've failed as many meds as Amelia has, it's like a one percent chance that it will work with the medical anti-epileptic medications," Angie said. 

Although it has been a struggle with disappointing treatments and numerous side effects, Angie and Josh refused to give up.

"We started looking online.  What are other parents with Dravet syndrome doing?  Because I bet they're not just watching their children have seizures all day long," Angie said.

That's when they found out about Charlotte Figi, another little girl in Colorado just like Amelia.  Charlotte's life changed by using a marijuana extract - as medicine.

"I mean, it was amazing watching her and her video and she's walking and talking and having one or two seizures a week from, 300," Angie said.

For the first time in a long time, the Weavers had new hope.

"We watched that and I just turned to Josh and I said, we have to get that for Amelia now," Angie said.  "I didn't want Amelia to suffer one more day."

"It's the extracted oil and you take it orally, like she does her other medicine," Josh said. 

Since then, they've been trying to find a way to get that type of treatment in Minnesota - making several trips to the State Capitol.  The Weavers have been in the middle of a contentious political debate.

It's the only option left for many families with epileptic children, buy those opposed to legalization are urging caution.

"The difficulty is that sometimes things can look good on the surface.  They can sound like there's good study at first, but when we get more information it doesn't turn out to be effective," Dr. Randy Rice said.

Dr. Randy Rice with the Minnesota Medical Association says the group wants more concrete research on the benefits and risks.

"We take a substance that's had really a limited study on a good scientific basis, it's really hard to be able to step out and recommend that," Rice said. 

And local law enforcement agrees, there's a need to move carefully. St. Louis County Sheriff Ross Litman says he's concerned about making it legal without knowing it's safe.

"I think it's worth the money and it's worth the time to ensure that, if we're going to do this and go down the road of legalizing it that it's done right," Litman said.

Duluth's Gordon Ramsay is with the Minnesota Chiefs of Police Association - they took a strong stance against an earlier bill that would have allowed growing and smoking marijuana.

"It's so ripe for abuse.  You look at the other drug issues we have," Ramsay said.

However, Ramsay says the group is not opposed to the form that would help kids like Amelia.  "I know the Chiefs Association, myself and many people feel that the medical portion, when you're talking about the liquid or pill form - It's not an issue.  So, let's pull out the grow your own, smoke your own and get it done."

While the legislature wrestles with the issue - the Weavers say the clock is ticking. Without the legalization they're seeking, they'll likely leave Minnesota for Colorado. 

"We're not criminals.  We're two parents of a very sick girl that are just asking for our legislatures to helps us." Angie said.  "I can't stay in Minnesota and watch Amelia go through this if she doesn't have to."

Until then, their holding on and fighting for Amelia.

Just last friday A House panel approved a bill that would legalize marijuana for medical use in pill, oil or vapor form in clinical trials. State law enforcement officials have said they won't oppose the measure. 

Angie says she's excited about the compromise bill and thinks it's the best chance to get something passed this session that will help Amelia.