Tell us about yourself and the Dravet Patient in your life
My family and I live in Crossville, Tennessee. We love spending every day with our little warrior and watching his favorite movie, Toy Story.
When did the patients seizures begin?
Bentley’s first seizure was when he was 4 months old. It was a short 30 second eye twitch. He turned 6 months old and had a seizure that lasted over one hour. We were terrified. We spent his first year of life fighting for answers. We finally received his diagnosis in Feb, 2023, just a few short days after his birthday.
What is your hope for the future of your loved one? For the Dravet community?
My hope for the Dravet community is for a cure, I would love to see a cure to help these sweet babies.
My hope for Bentley, is to be seizure free. We started him on a new medication called Diacomit and so far he is doing great. I hope it continues. As of April 2024 he has been seizure free since December 2023.
What advice do you have for newly diagnosed Dravet families?
My advice for newly diagnosed Dravet families is to not give up fighting. You’re not alone, reach out to other parents who struggle with the same issues. Always remember how strong you are and never get discouraged. A bad day is just a bad day, not a bad week, month, or year. It’s just one bad day.
Were you the recipient of a Patient Assistance Grant?
I have never received a grant. But I did win a SAMi 3 camera from the Dravet Syndrome Foundation and it has helped us tremendously. We can sleep better at night knowing we have a system to help alarm us when he is having a seizure.
