The Journey to the Truth
— Meagan Earley

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 one of my greatest joys…

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 disease. Austen, my 9-year-old daughter,…

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 still remember the sensation of…

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 do. Now as a mom,…

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 through a short period when…

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 I believe it quite literally…

When my marriage ended several years ago, I received advice that went something like this: “You will never find someone again as a single mom of three kids, especially when one of them has special needs.” At the…

A couple months ago, Austen, my 8-year-old with Dravet syndrome, participated in a series of practice tests to prepare for our state’s standardized testing. We recently got the results. I’d originally had a few concerns about Austen…

When Austen, my 8-year-old with Dravet syndrome, started taking Fintepla (fenfluramine), I didn’t have much hope. It was quite literally our last option, as every medication previously thrown at her had failed. Why, then, should I…

“Does this mean I have a disability, too?” The D-word is akin to a four-letter word in our home. We don’t like to consider Austen, my 8-year-old with Dravet syndrome, as disabled — especially when she’s been doing…

Austen, my 8-year-old daughter with Dravet syndrome, is in the third grade this year. That means she’ll take standardized testing for the first time. That’s both good and bad. On the one hand, it’s amazing she’s doing well…