Our family packed up and moved from Texas to Colorado just weeks after Austen, my 9-year-old daughter who passed away last year from complications of Dravet syndrome, was diagnosed with the condition. She was only 13 months at the time, and we stayed there for over five years. We…
Columns
My late daughter, Austen, loved birthdays, even when they weren’t her own. She loved any opportunity for a celebration, cake, and presents. And hers or not, she was going to help open them. Last year, the birthday of my husband, Dakota, was only two days after Austen’s memorial. We…
It’s been one year since we lost Austen, my 9-year-old daughter who passed away due to complications of Dravet syndrome. One year without her kisses and her sweet voice asking if I need a hug. One year without seeing her play or fight with her siblings. One year without…
I went back to work a little over a month after losing Austen, my 9-year-old daughter who passed away from complications of Dravet syndrome. Many asked me how I could do it, but the decision to go back to the classroom was never a question in my mind.
This June, for Dravet Syndrome Awareness Month, many articles are going to give you statistics, numbers, and graphs that show how horrible this disease is. I want to paint you a different picture. I want to encourage you to remember children who’ve fallen victim to Dravet syndrome in the…
I made a deal with my late daughter, Austen, when she was just 1 year old. The deal was that she’d make it to 10. That was because she had Dravet syndrome, and statistics showed that most deaths attributed to the syndrome occur before a child is 10…
I’ve known since I was a small child that whenever I pass, I want to go to a specific cemetery. It sounds odd, I know, but five generations of family ahead of me have gone into that same plot of land. Imagining joining them as part of the sixth generation…
When my daughter Austen passed away last summer, I honestly believed I wouldn’t be able to survive the pain. She was 9 years old, and I’d spent eight and a half of those years focused on keeping her healthy and alive through her Dravet syndrome. The pain was all-consuming;…
Yearbooks are like mirrors that give us a glimpse into the past. As a teacher, I love looking at them. During the school year, I’m so focused on the daily ins and outs of teaching my students that I often feel like I’m on autopilot. Sitting down with that year’s…
My family moved to Colorado when Austen, my daughter who last summer passed away at age 9 from complications of Dravet syndrome, was just a year old. We moved to get her access to medical cannabis there, and while I don’t regret that choice, it was hard to take…
Recent Posts
- Altered brain support cells drive Dravet syndrome symptoms in mice
- I wouldn’t change a single thing about my daughter’s story
- New study links mitochondrial dysfunction to Dravet and other DEEs
- FDA, developer align on pivotal study of Dravet syndrome gene therapy ETX101
- Storing memories to teach future generations about our journey