Tell us about yourself and the Dravet patient in your life
Musa is a happy baby, loves to explore and eat almost everything. He has 3 older siblings that love him so much! He loves the water and to be outside. We live in Dallas, TX!
When did the patient’s seizures begin?
Seizures started at 4 months old. They kept happening every week until he went into status and so the neurology department at childrens dallas was pushed to do a genetic test on his and surly enough he had the SCN1A mutation.
What is your hope for the future of your loved one? For the Dravet community?
To live a full life. To be able to give him every opportunity like all my other children. It might look different but I want it for him regardless. Life is meant to be lived to the fullest.
What advice do you have for newly diagnosed Dravet families?
Take a deep breath. Take time to process and understand your child’s diagnosis and don’t be afraid to ask questions, don’t be afraid to advocate other ideas to your doctors. Always let the doctors know what your goals for your child are and that way you can all Work together to make the best plan for the child.
