The Journey to the Truth
— Meagan Earley

Within days of my daughter Austen’s accident last summer, I began to think I’d never be able to live in our old house again. A week or so after she died, I went back,…

My daughter Austen, who passed away last summer at age 9 from complications of Dravet syndrome, wasn’t attached to many things. It may have been related to her autism, but she just wasn’t…

Losing my daughter Austen, who had Dravet syndrome, was the hardest thing I’ve ever gone through in my life. There’s no way around that. It doesn’t matter if you know your child is…

Back-to-school season is usually filled with wonder and excitement. New clothes, new books, and even the smell of new pencils make me blissfully happy. As a teacher, going back to school with my…

In February 2016, I learned about Dravet syndrome from a Google search. My youngest daughter, Austen, then only 8 months old, had been having seizures for the past three months and we couldn’t…

For a large part of her life, Austen, my 9-year-old with Dravet syndrome, didn’t seem aware of the limits that seizures brought to her life. She was fearless — so much so…

I’ve never liked being away from my children. Even before Austen, my 9-year-old with Dravet syndrome, got sick, I didn’t spend a lot of time away from my kids. Being a mom is…

Every year as the calendar flips to June, marking the start of Dravet Syndrome Awareness Month, I find myself reflecting on what it means to be the parent of a child with the…

The last few weeks have been a whirlwind. Austen, my daughter with Dravet syndrome, turned 9 years old. Eleven days later, we observed the eighth anniversary of her Dravet syndrome diagnosis. I…

As a kid, I didn’t play team sports, but I did a lot of cheerleading and gymnastics. I loved dancing around, tumbling, and challenging my body to do things it typically wasn’t meant to…

When Austen, my 8-year-old with Dravet syndrome, started having seizures, most were for no apparent reason. Her only identifiable trigger seemed to be fever. It’s true that as an infant, Austen went…

Fintepla (fenfluramine) is what’s currently keeping Austen, my 8-year-old with Dravet syndrome, alive. It’s given us the most seizure freedom we’ve ever had, allowing us to move back to Texas, and…