Tell us about yourself and the Dravet patient in your life?
We live in Wisconsin and are a family of four that consists of mom, dad, Bauer and his younger brother Bryden. We enjoy bike riding, boating, fishing and swimming.Â
When did the patient’s seizures begin?
Bauer’s seizures began at 3 months old. They started with partial focal seizures, then developed into tonic clonic status seizures that lasted the next 4 years. It was a living nightmare for 4-5 years! I have Complex-Post Traumatic Stress Disorder from that time. I had to quit my job to care for him and I am still at home 16 years later. Life was hard for all of us.
Bauer is very well controlled and 3 medications. He has been controlled since about 6 years of age. He has developmental delays, like he cannot read, write or do math. He has some physical impairments with his legs and feet.
What is your hope for the future of your loved one? For the Dravet community?
To live a happy and long life.
Wishing for a cure.
What advice do you have for newly diagnosed Dravet families?
Live day by day. Find alternative health practitioners. Research the gut and brain connection. I feel this is what helped Bauer.
