Amelia Weaver, who was considered the face of medical cannabis in Minnesota, has passed away last week. She was 12 years old.
Amelia and her family helped shape the state’s medical marijuana law, which took effect in 2015.
The girl suffered from a rare and severe form of epilepsy. And before she started using medical cannabis, Amelia was having multiple seizures in one day.
The Weavers’ fight for medical cannabis legalization
In 2014, the Weavers had considered moving to Colorado in order to have legal access to medical marijuana. Colorado is one of the first states that have legalized the use of cannabis for medical and recreational purposes.
However, the Weavers decided to stay in Minnesota and to instead embark on a campaign for a change in cannabis legislation. And they succeeded. The medical use of cannabis became legal in the state after Governor Mark Dayton signed the medical cannabis bill in May 2014.
The registration process under the state’s medical cannabis program began in June 2015. One month later, they started distributing the drug.
Medical cannabis in Minnesota
The use of specific forms of cannabis is allowed in Minnesota for the treatment of severe medical conditions. The nine qualifying conditions include cancer, severe epilepsy, glaucoma, HIV/AIDS, ALS, Tourette’s syndrome, Crohn’s Disease, multiple sclerosis, and painful terminal illness wherein the patient only has less than a year to live. Post-traumatic stress disorder (PTSD) and intractable pain were added later.
Patients qualified to use the drug can only use it in liquid, vaporized, or pill delivery method. Yes, dried leaves and plant form are not permitted.
Because of the very limited number of qualifying conditions, as well as the limited forms of cannabis products allowed, Minnesota’s medical cannabis law is considered to be the most restrictive in the U.S.
Amelia’s condition improved
Amelia’s parents were able to get medicine for her from Leafline Labs. The LeafLine Labs team had also recommended a customized care program that is based on a medicine formulated with higher levels of the non-psychoactive cannabidiol (CBD) than the psychoactive tetrahydrocannabinol (THC). This product is called Cobalt oil.
After starting with her therapy, Amelia’s condition improved. In the first three days of treatment, she only had one short seizure. And in two weeks, she started to walk again on her own.
Within the first month, Amelia started laughing again after a long time. She experienced many days being entirely free of seizures.
Amelia has passed away
Amelia’s family shared sudden news about her condition last week via the Fighting for Amelia Facebook page.
The girl’s health took a turn for the worse this summer, and on August 8, the Weavers announced that she was in a “rough shape.” Amelia had been airlifted to Rochester’s Mayo Clinic, where they tried to make her stable and comfortable.
On Thursday, August 16, the Weaver family shared the news that “Warrior Amelia” had passed away after a lifelong battle against SCN2A mutation.
SCN2A is a gene that has been identified to cause epilepsy, autism, and other neurological issues like dsyautonomia and dystonia when there is mutation or deletion.
Amelia was diagnosed with a rare form of epilepsy due to SCN2A mutation at the age of six. She was experiencing as many as 100 seizures a day when she was nine years old.
While she had already met developmental milestones and was already speaking in sentences when she was younger, her condition worsened. She was unable to walk and became non-verbal. She also slept very little due to her seizures.
Conventional anti-epileptic medications had failed. And many of these drugs had severe side effects.
This led to Amelia’s parents turning to medical cannabis.