Arianna lives in Texas with her parents and older sister. She loves music and likes to sing and dance. She also enjoy playing with her toys and swinging.
When did Arianna’s seizures begin?
Her seizures started the day after she turned 6 months old. The first two years she was hospitalized at least once a month (probably more) due to status seizures. After she turned 2, she received a VNS implant which stopped the status seizures. She was finally diagnosed at age 8 after trying Lamictal, which increased her seizures.
What is your family’s hope for your future? For the Dravet community?
We pray a cure will be found so that the seizures will no longer disrupt our lives. For us, it’s too late for major cognitive improvement, but for the Dravet community I hope that someday a Dravet diagnosis will be as easily controlled as other more common medical problems like diabetes.
What advice do you have for newly diagnosed families?
Education is important not only for you, but for your child’s doctors. Don’t be afraid to speak up and advocate for your child, and if your doctor isn’t taking you seriously, find one who will.