Tell us about yourself and the Dravet patient in your life
We are from a small town in Pennsylvania. Londyn had a brother who is 7 and the biggest help when it comes to londyn and dravet. We love being outside but with londyn being tempsture sensitive that is hard to do for more then 30 mins at a time. Seizure free days bring me joy honestly those are the best days and remind me not everyday is a bad day.
When did the patient’s seizures begin?
Londyn had her first grand mal seizure at 4 months and it was 10 hours after her vaccines. I remember being sent home saying it was most likely febrile but I knew it was more because she didn’t have a fever when she started seizing she seized for two hours and then Had a fever. Our life consists of many many doctors apts, and living in hospitals for months at a time.
What is your hope for the future of your loved one? For the Dravet community?
My hope is that they find a cure or a better med to better control the seizures. No child should have 100-200 seizures a day. I’m going to school because of her condition to better care for her and help parents understand this diagnosis.
What advice do you have for newly diagnosed Dravet families?
My advice is make sure everyone in your care plan is on the same page and knows Dravet in and out. Also take this disease one day at a time or you will become overwhelmed.