Hibbing – When Jean Cole at Hometown Focus asked me to write an update on our daughter Amelia, I thought the timing was pretty perfect, because we are fast approaching November, which is epilepsy awareness month. Jean wrote a story about Amelia and our familys struggles in 2014, before medical cannabis was made legal in Minnesota.
My beautiful daughter, Amelia, who loves unicorns, dancing with her little sister Penelope, and watching her favorite movie Cinderella, also happens to have an extremely rare form of epilepsy, Scn2a mutation. This catastrophic form of epilepsy is so rare that at this time we are connected with just 200 families worldwide whose children have Scn2a.
Amelias rare form of epilepsy has affected every aspect of her life – physically, emotionally, developmentally. In the hunt to find something to help end our daughters suffering we learned that many children with uncontrolled seizures were having success with medical cannabis. Amelia had already failed 23 prescription anticonvulsants and we were all but out of options. You may have seen the many media reports about the months my family spent advocating for medical cannabis legalization in Minnesota.
In a lot of ways, we are your typical Minnesota family. We cheer for the Vikings, enjoy being involved at our church, take pride in our community, and value our family and friends. My husband Josh works in IT at Hibbing Community College. Weve been married for 14 years. We have two daughters Amelia, 10, and Penelope, 6. Im a stay at home mom and Amelias caregiver.
You may also have heard about how well Amelias been doing since Minnesota legalized medical cannabis. Amelias had the best quality of life and the most seizure control of her life since starting medical cannabis. Its hard to describe what these good days have meant to us.
Amelia was having almost 100 seizures a day; now, some days for Amelia are completely seizure-free. Shes made cognitive gains, started smiling (something she rarely did before), and even regained some skills shed lost. Advocating for medical cannabis was really hard on my family, but everything we went through was worth it for just one day without seizures. I want to make sure to add that Amelia still has seizures. Scn2a is a lifelong battle for Amelia. Medical cannabis is the best treatment that weve ever found for her, but it is not a cure. Amelia still has many seizure triggers, and a very difficult time with seizures when she is ill. But, having the best treatment for Amelia is amazing. Ending just some of her suffering has been the best gift – each day is like Christmas morning.
On July 1, a LeafLine dispensary opened in our hometown of Hibbing, MN. It was a huge day for us. I had to pinch myself a few times. If you had told me when I was advocating that they would be opening a medical cannabis dispensary in my hometown I wouldnt have believed you. We have had such an incredibly good experience at LeafLine Labs. Everyone involved is so knowledgeable and passionate about helping their patients. LeafLine even formed a team to come support Amelia this summer at her Scn2a ColorDash!
You might be wondering whats next for the Weaver family. Well, we will continue to share our story on our public Facebook page, Fighting For Amelia. I truly believe that sharing our story will help change minds. I hope for the day that cannabis prohibition ends. I want all my friends around the world to have safe, legal access to the best medicine for their condition.
Our focus now is on Fighting For a Cure. I am so thrilled to share about our involvement with the FamilieScn2a Foundation. The FamilieScn2a Foundation was created by parents of children with SCN2a and our goal is to find a cure. This July I attended our first Family and Professional Scn2a Conference in Chicago. Getting to meet families and children from around the world also battling Scn2a was life-changing. It motivated and inspired me to continue to fight for a cure. Because of our involvement with FamilieScn2a Foundation we were able to participate in two research studies this August in Seattle, Washington. When your child has something so rare, its absolutely thrilling when you get researchers interested in studying it. Our whole family participated in the research study. It was an amazing experience.
Ive also been enjoying being the Vice President of the Kids Kare Fund board. We give financial first aid to local children with health difficulties on the Iron Range. Being able to help families in situations similar to ours has been a very rewarding experience. If you know a local family who would benefit from the Kids Kare Fund, please refer them to kidskarefund.org to apply.
For now, we are savoring every single good day Amelia has. We are grateful for every moment with our warrior. To everyone in our community that has showed us endless support we cant thank you enough. Having a child with complex medical needs is very hard, and all of your support has meant the world to us. We will always keep fighting for Amelia.
News Moderator: Katelyn Baker
Full Article: Medical Cannabis – A Miracle For Amelia Weaver And Her Family
Author: Angie Weaver
Contact: 218.741.0106
Photo Credit: None Found
Website: Hometown Focus
