Today, a memory popped up on my Facebook timeline from five years ago. It was a video of our little baby Austen, then 6 months old, bouncing in her jumper. I was trying to get her to say “Mama,” but she kept saying “Dada.” Her words were in perfect rhythm with her bouncing, and it ended with a full belly laugh that only babies can do.
The video was recorded the morning after arriving home from Austen’s second hospital stay, in December 2015. That day, I realized that our ER doctors had been wrong, and Austen’s hospital visit wouldn’t be a one-time thing. It was an absolutely horrible day, but that single memory of her has stuck with me, and remains among my favorites today. It is an example of how strong and resilient my baby is, and has always been. Even in the face of so many roadblocks and unknowns, she still managed to smile and talk. She was still herself.
When I took that video, I had no idea what lay ahead in 2016. I didn’t know what heartache would come, how many seizures Austen would have, or how bad her symptoms from Dravet syndrome would get. I felt anxiety and anticipation without knowing what the next year would bring.
I had hoped 2016 would be a year of redemption and joy, and that what we had experienced was just a fluke. I believed the new year could bring an end to all we’d been through.
Fast-forward several years, and I was praying for joy again, because I already had experienced the despair that seizures caused by Dravet syndrome could bring. I was praying for any relief for my daughter, but I had given up on believing that any would actually come. I prayed that Austen would be able to potty train again, after having regressed and gone back to using diapers.
It’s curious how life works. 2020 has been so hard on so many people, and it hasn’t been the easiest for us, either. But despite its hardships, 2020 has blessed us with so much. Thanks to a new medication, Fintepla (fenfluramine), and the seizure freedom it has allowed Austen, I have been given everything I prayed for.
When Austen started a Fintepla clinical trial in 2019, we had heard big things about its potential. Some kids were experiencing more than a year of seizure freedom, thanks to the medication that eventually was approved by the U.S. Food and Drug Administration last June.
But by then, Austen had already failed so many meds that we initially didn’t allow ourselves to believe she might have a positive outcome with Fintepla. Nevertheless, we’ve gone four months without a big seizure. But that’s not all 2020 gave us. We haven’t had a single ambulance ride or inpatient hospital stay the entire year. Austen is learning to read and interact with her peers. And she is almost potty trained again.
In terms of Dravet syndrome, 2020 was a dream for our family, and I hope I never wake up. Today, I’m not praying we find seizure freedom; instead, I’m praying that our seizure freedom continues. How awesome is that?
I don’t know what 2021 will bring, but if it’s a fraction as good as last year was for Austen’s seizures, I’m all in.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
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