We live in Ottawa Ontario Canada. I am married with 2 daughters the younger one Zara has Dravet syndrome. Being all together brings us joy, we enjoy family dinners and playing at home.
When did Zara’s seizures begin?
5 months old. The early days were very bad for my daughter she suffered with very bad myoclonics that were constant, some tonic clonics and bad atonic drop seizures that went on for a year. We tried many medications and moved on the to ketogenic diet and a new med that finally helped her. She was tested for scn1a based on her presentation.
What is your family’s hope for your future? For the Dravet community?
We hope for a treatment that stops the seizures and gets rid of triggers. We can’t really go outside to play without my daughter having drop seizures and she gets hurt so we dream of a day we could go to a park all together without stress
What advice do you have for newly diagnosed families?
To hang in there and try and wean medications that don’t help. Keep trying more until you find one done give up.
