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…
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.
My mind has been filled with memories of my 9-year-old daughter, Austen, since she passed away from complications of Dravet syndrome 16 months ago. Some days, it’s all I can do to think of anything else besides the constant flood of moments with her that my mind wants to…

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…
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 far off, with the start of school and Austen, my 8-year-old with Dravet syndrome, beginning…
Author Kellie Elmore has a great quote I find fitting for my family at the start of summer: “I love how summer just wraps its arms around you like a warm blanket.” As a teacher and single parent of three children, I typically spend the summer playing catch-up.
When Austen, my 7-year-old daughter with Dravet syndrome, was born, I had no idea that the disease existed, much less that it was embedded in my perfect baby’s DNA. Even when she began experiencing seizures, the next four months were like swimming in a murky lake. We knew…
Last Monday, we skipped soccer practice for Austen, my 7-year-old daughter with Dravet syndrome. Soccer is a regular part of her routine. No one was sick, and the weather was nice. But I was exhausted, and all I wanted to do was get home, put away two loads…
I wrote in my last column about how I have to allow life with Austen, my 7-year-old daughter with Dravet syndrome, to ebb and flow in keeping with her needs. This demand often requires me to put my own wants aside. The perfect example of it came on…
Jay-Z once said, “Don’t ever go with the flow. Be the flow.” And while I love Hov and his music as much as any self-respecting ’90s kid, that advice doesn’t always work when your child has special needs. Just before Christmas break, we made the decision to move…
Not long ago, I wrote a column about how Austen, my 7-year-old daughter with Dravet syndrome, was doing in her new school. She’s gone through a lot of changes in the past year, including her parents splitting up and a move to a new state. These changes would…
Back in November, I wrote about my 7-year-old daughter’s great accomplishment. Austen, who lives with Dravet syndrome, had set a new seizure-free record that seemed to be holding strong. But as it did last March, the flu hit our household in early December. It hit Atlas, Austen’s 9-year-old…
Recent Posts
- 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
- Stoke readies to meet with FDA on 4 years of zorevunersen study data
- Continuing family traditions helps keep my daughter’s memory alive
- FDA awards RMAT designation to Dravet syndrome gene therapy
- A return to homeschooling reminds me how high my daughter soared
- COULD IMPROVED SEIZURE CONTROL HELP YOUR LOVED ONE DO MORE OF WHAT THEY LOVE?
- Zorevunersen shows long-lasting seizure control in Dravet patients
- A hospital visit brings back memories of a helping community
- A trip to Colorado brought back memories of my late daughter