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…
The Journey to the Truth – a Column by Meagan Cheney
Even before Austen, my 9-year-old daughter who passed away from complications of Dravet syndrome, was born, I always loved traditions. Our family may not have had much money to spend frivolously, but traditions made up the rhythm of our year and gave us something to look forward to each season.
The back-to-school season looked a little different for my family this year. After losing my 9-year-old daughter, Austen, last year to complications of Dravet syndrome, I decided to take this year off from teaching in the classroom and homeschool my son, Atlas, so it would be easier to…
I recently had a visit at a Children’s hospital for the first time since losing Austen, my 9-year-old who passed away last year from complications of Dravet syndrome. While it was part of the same network as the hospital Austen visited, it was in a different city, for a…
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…
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…
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