Amelia Weaver, the Hibbing girl whose fight with a rare form of epilepsy led her parents to the center of the campaign for medical marijuana in Minnesota, died Thursday. She was 12.
"Warrior Amelia after a lifelong battle with Scn2a passed away today," parents Josh and Angie Weaver posted Thursday on their "Fighting for Amelia" Facebook page. " We did not take one single moment with our Amelia for granted. It was the greatest privilege of our (lives) to be Amelia's parents. There are no seizures in Heaven sweet girl."
After suffering from seizures in early childhood, Amelia was diagnosed at age 4 with Dravet syndrome Scn2a, a condition caused by a gene mutation that produces a particularly devastating form of epilepsy. She was one of only 150 children in the world known to have Scn2a.
When the News Tribune visited the Weaver home in early 2014, 7-year-old Amelia was experiencing between 20 and 30 seizures daily. She was unable to communicate verbally, and when she walked she did so aimlessly.
Learning of success stories in other states for epileptic children treated with medical marijuana, the Weavers embraced the campaign to legalize the drug for medical purposes in Minnesota. They found a willing ally in then-state Rep. Carly Melin, DFL-Hibbing, who authored a legalization bill in the 2014 session.
Amelia, with short brown hair and soulful brown eyes, put a public face on the effort, appearing alongside her mother at news conferences, rallies and meetings with legislators. After a vigorous campaign, the bill to allow treating epilepsy and other specific conditions with medical marijuana was passed and signed into law by Gov. Mark Dayton on May 29, 2014.
Legalization didn't take effect until July 1 of the following year, and the Weavers experienced frustrating delays before it became available to their daughter. But LeafLine Labs, one of the state's two medical marijuana suppliers, eventually placed a distribution center in Hibbing.
By the end of the first month, Angie Weaver reported Amelia had experience a seizure-free day. The next six months were the best since Amelia first had seizures, the Weavers reported later. At one point, she was seizure-free for 20 straight days. She would smile and make eye contact with little sister Penelope and her parents.
A photo of Angie and Amelia Weaver was featured on the LeafLine Labs website, with a link to their story and more pictures.
But Amelia was still a sick girl with a compromised immune system. She suffered setbacks and hospitalizations, including an anxious drive to the Mayo Clinic on Christmas Day 2015.
She recovered slowly, but suffered additional setbacks and last Sunday again was airlifted to the Mayo Clinic, her parents reported on Facebook. "Sadly, Amelia is in very rough shape," they told friends and family last week.
Amelia Weaver was the second medical marijuana user whom the News Tribune profiled to die this year. Jess Blake, a Duluth resident who taught in Esko, died on Feb. 22 of glioblastoma multiforme, an aggressive form of brain cancer. As with Amelia, Blake and her family and friends reported a significant improvement in symptoms after she began taking medical marijuana.
The Weavers said on Facebook that details for a celebration of Amelia's life will be announced within the next few days.