Tell us about yourself and the Dravet patient in your life
We are from Cincinnati, Jo Jo is currently 12. We love to attend events from A kid again, we live each day the best we can.
When did the patient’s seizures begin?
Jo started having seizures at 4 months old, seizures continued to increase and get longer. After having a 6 1/2 hour long seizure when she was 18 months old, her genetic testing came back showing Dravet.
What is your hope for the future of your loved one? For the Dravet community?
Support, comfort, friends, a village behind families to help them through times.
What advice do you have for newly diagnosed Dravet families?
Do your research, find support, know each child is different, so don’t be defeated when a medicine or trial doesn’t work for your family.