Tell us about yourself and the Dravet patient in your life
We live in the Midwest (NW Missouri). We love to be outside, watch/race motocross and spend time with family.
When did the patient’s seizures begin?
Jagger started having seizures at 5 months old. It was very unexpected and scary. As the seizures became more frequent and longer our neurologist decided to have genetic testing done which is when we discovered his de novo mutation of the SCN1A gene.
What is your hope for the future of your loved one? For the Dravet community?
We feel fortunate that we got an early diagnosis for him, and that the research and clinical trials for Dravet syndrome are in the works and hopeful for a cure on the horizon. We just want Jagger to be able to live a life with no limitations that this disorder often brings.
What advice do you have for newly diagnosed Dravet families?
Connect with other Dravet parents and families, find a doctor you are confident in and advocate for your child- you know them best!