The Journey to the Truth – a Column by Meagan Cheney

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…