Testimony of Angie Weaver

Amelia Weaver

Angie’s oldest daughter suffers from Dravet Syndrome, a devastating seizure disorder that is notoriously unresponsive to traditional anti-epileptic medications. Angie and her husband have discovered that many families in similar situations have found success controlling this rare disorder with medical marijuana.

My name is Angie Weaver. I am a stay-at-home mom from Hibbing, MN. I earned my bachelor’s degree in Family Consumer Science from Minnesota State University, Mankato. Before I had my daughters, I worked with children and families in a variety of settings including daycares, an elementary school, and also for Lutheran Social Services. I have always loved children, and could not wait to have my own. My husband, who works for the state of Minnesota in Information Technology at Hibbing Community College, and I have been married for 11 years. We have two daughters, Amelia, age 7, and Penelope, age 3. I would like to tell you about my daughter Amelia.

Amelia was born a healthy, full-term baby on May 2, 2006. She was more beautiful than I ever could have imagined. Amelia filled our lives with so much love, fun, and excitement those first two years. It’s always hard to put into words how much you love your child, but I can try. Being Amelia’s mother brought me the greatest joy and the most overwhelming feeling of love I had ever felt in my life.

Amelia hit all her developmental milestones until she turned 18 months old. At 18 months old, she caught the flu and had a seizure in our pediatrician’s office. Watching my baby have a seizure was the scariest experience of my life.  Time seems to stand still, yet stretch on forever. You forget to breathe, and you hear the pounding of your heart. This is an experience I wish no parent ever had to have. Our pediatrician told us the seizure was likely a febrile seizure caused by her fever and flu bug and we were advised to take extra care when she had fevers. I was so scared it could happen again, but she seemed to be doing fine.

Amelia did not have another seizure for almost a full year. By then she was 2½ years old; walking, talking in sentences, singing her alphabet, and counting to 20. We woke up late one morning. Amelia usually wakes up first, so it was strange that she was sleeping later than us. My husband went to check on her and found her having a seizure in her crib. We do not know how long she had been having her seizure for. By the time we got to the hospital, her seizure had stopped. It was followed a few minutes later by another seizure. She had four more seizures before they sedated her to the point that she stopped seizing.

I vividly remember standing over her hospital bed, watching her face turn blue and her entire body shake with the seizure. She was so tiny in the hospital bed in her yellow footie pajamas. I prayed and prayed that her seizures would stop. The next four months were spent in and out of three different hospitals searching for relief that we couldn’t find. We could not find anything to help control the seizures and Amelia lost the ability to talk, walk, and feed herself. To go from one day, having your child singing the ABC’s in the bathtub, to the next, with her not being able to get out of the hospital bed, is an indescribable agony.
After those first four months and with Amelia on a combination of a special diet and two antiepileptic medications, she was able to have a short period of being seizure free. She gained the ability to walk and talk again. I resigned myself to the fact that she would suffer from seizures, but I fully believed we had more control over the situation. She would be able to talk and have a full life. I felt as if my family could handle this.

Unfortunately, this period of seizure control did not last long. Since then, Amelia has been on over 23 anti-epileptic medications. She has had over 1,000 seizures. She lost the ability to speak or communicate before her sister, Penelope, was born and she has regressed developmentally. I stay at home to provide Amelia with the full-time care she needs. Currently, she is having 20-30 seizures a day.

We had tests done at 4 different hospitals trying to figure out why Amelia was having seizures. At age 6, the Mayo Clinic genetically diagnosed Amelia with Dravet Syndrome. Dravet Syndrome is a rare, catastrophic form of epilepsy. This was a very hard diagnosis to get. There is a startling shortage of treatment options, as anti-epileptic medications rarely work, and the long-term outcome of kids with Dravet Syndrome is not good. We had already tried the special diet and 23 different antiepileptic medications, and they were not working.

My husband and I both started researching Dravet Syndrome and  were amazed to hear parents reporting success treating their children with Dravet Syndrome by using a form of medicinal marijuana. This specific kind of medical marijuana has high levels of CBD (Cannabidiol), which does not induce the same psychoactive and physiological effects often associated with marijuana. The CBD is extracted and mixed with oil to be administered with a dropper orally, just like her other medications. Children using this medicine have regained skills and cognitive function in addition to controlling their seizures. I didn’t want my daughter to suffer one more day. I wanted to get her the medication that would help her. After further research, we concluded that the only way my daughter would get the medicine she needs to control her seizures would be to either move to a state where medicinal marijuana is legal, or help change the law in our beloved home state of Minnesota.

I will do anything for my daughter (including moving), but the thought of leaving our family, support system, community we grew up in, church, friends, and my husband’s job and health insurance plan is hard to think about. The support provided by long fostered social networks becomes even more vital when you have a child with life changing special needs. Moving to another state, far from our friends and family, would be so hard on us. We want to stay in Minnesota. It’s our home. I believe the people of Minnesota are compassionate and smart enough to put policies in place that will allow people who suffer from debilitating conditions – like my daughter – to have access to the medication they need.