Tell us about yourself and the Dravet patient in your life
I’m a single mom to my beautiful 11 year old daughter Sophia. We currently live in Aurora, CO. We love singing, dancing, reading books, cooking, and painting together. Other favorites of Sophia are bowling, riding her tricycle, playing board games, and going to school.
When did the patient’s seizures begin?
Sophia was 9 months old when she had her first seizure. They continued every month like clockwork, each lasting 30-45 minutes and requiring trips to the emergency room. Our first two neurologists were unaware of Dravet Syndrome and it wasn’t until a resident working under one of them confirmed that she was having myoclonic seizures and wanted to get a genetic test panel done. We received the results when she 2.5 years old. And we were finally given appropriate medications to treat the Syndrome.
What is your hope for the future of your loved one? For the Dravet community?
We need a cure. We need more caregiver support. More states need to approve parent caregivers to be paid as this life makes it impossible to earn a living wage.
What advice do you have for newly diagnosed Dravet families?
Reach out for all the support you can. We are now a large community and a wealth of experience and help. When dealing with medical professionals, you will be the subject matter expert and you will need to sometimes be aggressive about getting your child the care you know they need. Also, you will make many difficult choices continuously while caring for your child. Don’t hold on the guilt about the consequences of those choices because none of them are easy and there is no one better than you to make those decisions.
