Hadley is part of a small family from South-Central Kentucky. In the summer months, you can find them out on the lake in their boat or in the woods on their side-by-side. Swimming and fishing are some of their favorite things to do!
When did Hadley’s seizures begin?
Hadley’s seizures began at 4 months old. We did not know what she was experiencing, as they were focal and didn’t last very long. Our first inkling that something wasn’t right came at 7 months old, in the middle of the night a few days before Christmas. We awoke to her cries once she had come out of the seizure. At that point, we still didn’t know this was a seizure because her little body was paralyzed on one side. We thought our baby had had a stroke. We now know this is called Todd’s paralysis, which is something that can happen following a seizure. Her official epilepsy diagnosis came after another seizure shortly following the previous incident. We did not get a Dravet diagnosis until she was 15 months old.
What is your family’s hope for your future? For the Dravet community?
My hope is, of course, a cure. My ultimate hope is that science comes so far as to establish a diagnosis at birth (or shortly after) and to begin treatments right away or that one day, epilepsy and gene mutations could be completely avoided.
What advice do you have for newly diagnosed families?
Cherish the present! Don’t lose hope, as we do not know what the future holds.