The Journey to the Truth
— Meagan Earley

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…

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…

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…

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…

“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 —…

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,…

Have you ever had a dream that shook you to your core? I’m talking about a dream that seemed so real you woke up crying in the middle of the night? I did a…

When we think of the Christmas season, many traditions come to mind, such as watching holiday movies, caroling, and spending days upon days in the kitchen making sweet and decadent treats. But as with…

As a parent of three, I took many experiences with my two oldest kids for granted. But because my youngest, Austen, has Dravet syndrome, I thought many of them — like swimming on…

October 2021 was one of the hardest months of my life. My marriage was ending, and in the chaos, the only clear thought I had was that I needed to get Austen, my…

When Austen, my 8-year-old with Dravet syndrome, was born, I’d been married for almost five years. My relationship was already rocky by then, but I was determined I wouldn’t let it fail. I’d…

As I was driving recently, I noticed the leaves were starting to turn. Here in Texas, it’s because of the drought rather than seasonal changes. But it still reminded me that fall isn’t too…