When the LeafLine Labs team first met with Amelia Weaver’s family in July 2015 at the Eagan Patient Care Center, everyone knew an important moment was at hand. What no one could have predicted was how many other firsts would follow.
For Amelia and her family, the situation was desperate. Diagnosed at age six with a rare form of epilepsy based on the mutation of the SCN2a gene, Amelia at the age of nine was experiencing as many as 100 seizures a day. In her earliest years, she met developmental milestones, spoke in sentences, sang the ABCs and counted to 20. But as her condition worsened, she became non-verbal, couldn’t walk on her own and slept only a few hours at a time. More than 20 anti-epileptic medications had failed, many of them with severe side effects.
After talking with Amelia’s parents Angie and Josh Weaver, the LeafLine Labs team recommended a customized care program based on their Cobalt oil, which is medicine formulated with higher levels of cannabidiol (CBD, non-psychoactive) than tetrahydrocannabinol (THC, psychoactive).
Once her therapy began, Amelia’s life began to change dramatically. In the first three days, she experienced only one short seizure. In two weeks, she was walking on her own. Within the first month, she laughed for the first time in years. Many days were entirely seizure free.
Angie Weaver remembers the early stages of therapy. “There were no guarantees,” she recalls. “And yet, we had to try. Amelia is so rare. There are only 200 children in the world with a SCN2a diagnosis. So really, nobody knows how to treat her and provide the care she needs. But to have an option and work with someone who’s excited to help our family, there’s no feeling in the world like that.”
One important first was better sleep. Before her care program began with LeafLine Labs, Amelia’s sleeping patterns were constantly interrupted by seizures. Once the seizures slowed and even stopped, Amelia began sleeping throughout the night.
During the days, another first was the freedom to leave the house. “Before medical cannabis, we spent most days at home. But Amelia likes to travel and experience new things,” Angie explains. “We went to a water park, which we would never have attempted before. We’ve been to Seattle, and Amelia has been to the top of the Space Needle. She’s able to have a life. She’s able to go watch her sister in her activities and be a part of our community.”
In April 2017, Amelia started using an eye tracking and control device that lets her communicate. Angie explains, “It’s a Tobii Dynavox device, and by looking at it Amelia can share her feeling and thoughts. Her body wasn’t able to show us because of the seizures, but her mind is there and it’s thriving and she’s able to communicate with us. It’s been amazing to see. By looking at the device and selecting choices, she can use it to tell her sister, ‘Let’s go play American Girl doll.’ Or, ‘Read me this story.’ And it speaks in a girl’s voice. She’s progressing so quickly it’s a little hard for us to keep up.”
Nearly two years into their journey, Angie looks ahead and reflects, “Our goal is for Amelia to have a life worth living. Yes, she’s going to have hard days, but we’re going to jam in as much fun and excitement as we can. We are all about new experiences. What I tell people about the impact of LeafLine Labs and their medical cannabis is it means fewer seizures and a better quality of life. That’s what it’s been for us. We’re a typical family and love our daughter. We wanted Amelia to have an option to end her suffering. I wish everyone had safe, legal access to medical cannabis.”