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 bright lights would cause her to have thousands of what we…
The Journey to the Truth
— Meagan Earley
Meagan Earley lives in Paris, Texas, with her three children, dogs, cats, and a turtle named Carl. She is a preschool teacher and a caregiver to her daughter, Austen, who was diagnosed with Dravet syndrome in 2016. Meagan has relied on her village of other Dravet syndrome caregivers in the years since Austen’s diagnosis, and writes her column in the hope of paying it forward to other parents who are fighting each day to help their child thrive in all circumstances.
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Eleven years ago, I brought new life into the world in one of my favorite months of the year, when things begin to warm and blossom. May 19, 2015, was one of the three best days of my life — the day my daughter Austen was born. The two other…
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 saved her life when she started taking it in 2019. But…
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 time, I didn’t care if it were true or not. I…
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 taking the tests. She’s reading, loves math, and is doing great…
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 expect Fintepla to work? But it did. Within a month of…
“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 so well despite the circumstances life has dealt her. Even during…
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 enough to take the test! On the other hand, she…
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 few nights ago. In the dream, my 8-year-old daughter Austen, who has Dravet syndrome, had…
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 many things in life, Dravet syndrome can sink its teeth into even the happiest of…
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 her own, discovering new toys, or even completing a full week at school without needing…
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 now 8-year-old daughter with Dravet syndrome, and her siblings back to Texas. That might sound…
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 grown up in a broken home, and I didn’t want the same for my kids. Even…
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