We are from Maine. We love to go for rides together as a family and we sing a lot of nursery rhymes a long the way. Our daughter really enjoys when we play learning songs to join in together.
When did Daliyah’s seizures begin?
She had very long seizures and some were polymorphic, changed in presentation. They are very hard to control but they never take control of her for long. She is a very strong spirited girl. She loves to smile and laugh. She has a nonsense de novo mutation on exon 18 of scn1a which was how they gave her this diagnosis. At first she was diagnosed with generalized seizures with febriles.
What is your family’s hope for your future? For the Dravet community?
We truly hope there is a cure or something to minimize the negative impact the syndrome has on children.
What advice do you have for newly diagnosed families?
Love hard, deep and strong. Every moment is a memory. Those memories are everything!
