Mia is 17 years old and has Dravet syndrome. Her first known seizures occurred 2 days before she turned 3 months old. During her first few years of life, we went through countless medications, ER visits, hospital admissions and so many prolonged seizures. She had genetic testing done just before her 3rd birthday. And we got the SCN1A gene mutation back. She was later diagnosed with Dravet syndrome. We learned that some of the medications that she was taking were not ok for someone with Dravet to take. Mia has been on the ketogenic diet (from age 3-8), had VNS placed, tried and failed 9 medications and was a part of a clinical trial and is still on that medication today. She also has a service dog, Butters who helps with seizure detection and behavior/calming help. Her previous service dog, Epic is retired and lives with us as well.
Mia loves to laugh, sing and dance! She LOVES life and loves to be with others. This was not always the case- but we are so thankful for how far she has come. She has overcome so many obstacles and continues to have her struggles- but she is so strong and resilient like her fellow Dravet Warriors.
She has taught me so much and continues to amaze me as her mom. I hope her story can inspire others like she has inspired me!
