UPDATE on 7/10/25
This weekend is the big fundraiser at Rosedale Beach Club. I will be combining the funds from that event with my Dye it For Dravet fundraiser. I did attempt to dye the girls hair but I failed so Im going to attempt to dye them again with some professional help! I raised my goal to $1000 to reach high for Cora! I think our community can do it! She had a seizure on Sunday while swimming in her happy place. She lost 4 hours of her day and so many memories. Let's do this for her...let's find a cure so no more ruined pool days! Thank you.
UPDATE: I went purple early since my hairdresser Kelsi and her family are going on a trip of their dreams to DISNEY. I'm hoping to reach our $500 goal, and then I will dye Cora and Maggie's hair! Help Maggie's dream come true for a head of purple and help supporta cure for Cora - a DREAM for MANY!
-----------------------
My name is Jen, and I am the mother to two beautiful daughters, Maggie and Cora. I am also serving my second term as a Dravet Syndrome Foundation Family Network Ambassador. My friend and hair dresser, Kelsi, and I are the proud creators of this fundraiser, Dye it for Dravet.
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 3 years on this planet, Cora has endured 34 seizures and has been hospitalized 18 times, including 5 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 previously 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 the bravest and most resilient person I know. She has endured so much in these 5 years and is still a loving and adventurous person. We are blessed to be her parents and support her in this life. I am dying my hair purple in efforts raise awareness and money for the Dravet Syndrome Foundation. We need to find a CURE for this dreadful disease. My wish is a future where Cora can be herself and live her life without the fear of an unknown medical situation robbing her joy.
