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 figure out why. We’d been informed that two-thirds of people with epilepsy never know what caused…
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.
Featured Post
I grew up in northeastern Texas, where it snows about once a year. Usually, it’s just a dusting that stays on the ground one to two days at most. Every few years, though, Mother Nature sends a real winter storm our way. We just survived the latest one, a week…
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 that we had to address her lack of self-preservation skills in applied behavior analysis therapy.
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 in life. Before my divorce, in fact, the longest I’d ever…
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, was diagnosed with Dravet syndrome shortly after her first…
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 falling I experienced during that phone call. I had mixed…
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, I love sharing this passion with my two oldest children. I’ve…
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…
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…
Recent Posts
- Dravet behavior, social issues emerge in toddlerhood, study finds
- A winter storm reminds me of magical snow days with Austen
- Online parent coaching helps Dravet kids build independence
- Cell study offers new clues to Dravet seizure triggers
- Epidiolex reduces seizures in rare Dravet syndrome cases: Study
- Faster-than-expected enrollment seen in trial testing zorevunersen for Dravet
- The little lost journal that brings back memories of our Dravet journey
- FDA grants breakthrough status to new gene therapy for Dravet syndrome
- First look at ETX101 suggests early benefits for children with Dravet
- Grief comes in waves and reminds me of the start of a long journey