We are the Kuhn Family.  We consist of Chris (dad), Jen (mom), Maggie (7) and Cora (4). Cora is our youngest daughter (pictured in my profile) who has Dravet Syndrome.  She was born in 2020 during the pandemic and experienced her first seizure randomly at 5 months.  She experienced 3 more seizures before being tested and diagnosed with Dravet Syndrome at 9 months young. In her short 4 years on this planet, Cora has endured 30 seizures and has been hospitalized 17 times, including 4 Pediatric Intensive Care Unit stays on life support.  Cora has endured multiple rounds of testing and bloodwork as well as participated in medical studies in efforts to learn more about this disorder to find a cure.  She has participated in hours of therapy for her speech, vision, development, occupational and physical needs.  Cora’s diet has also been medically managed by Ketogenic and Modified Atkins protocols.  She takes at least 9 medications a day EVERY DAY in efforts to minimize her seizure activity.

Cora is one of the bravest and most resilient person we know.  She has endured so much in these 4 years and is still a loving and adventurous toddler.  We are blessed to be her parents and support her in this life. 

Jen is a Dravet Syndrome Foundation Family Network Ambassador and one of the original creators of the Dye it for Dravet fundraiser. As a family, we raise awareness and money for the Dravet Syndrome Foundation.  We need to find a CURE for this dreadful disease.  Our wish is a future where Cora can be herself and live her life without the fear of an unknown medical situation robbing her of joy.