My Daughter Sets a New Record for Going Seizure-free
Child seizures are one of the biggest concerns of Dravet syndrome caregivers
For most of her life until now, my 7-year-old daughter, Austen, who has Dravet syndrome, held the same record for the number of days she’d gone without a seizure. Dravet syndrome is characterized by frequent seizures that are often resistant to treatment. Austen’s record was 178 days.
Roughly the equivalent of six months, it was the period from when she was born until she had her first seizure. I have worked every minute of the last seven years in an effort to get Austen back to that point, even if it’s just once. We’ve been through medication changes, varying dosages, and different treatment strategies.
In the fall of 2021, Austen came close to reaching her goal by being seizure-free for four months. After that, her seizures were about two months apart. When she had another seizure last March, I thought we’d never break that 178-day record. I reassured myself by thinking that even every two months was better than having numerous seizures a day, as Austen did before we started treating her with Fintepla (fenfluramine).
But then a month went by with no seizures. And then two and three. Now, as I write this in early November, Austen has been seizure-free for an incredible 235 days.
Out of nowhere, she set a new record — just like that.
While I am ecstatic, I also know that with Dravet syndrome, there are no guarantees. Children can be seizure-free for a period of time before their condition worsens. This ugly disease seems to always be one step ahead, and we never know what will happen tomorrow, today, and even in the next hour.
So we take things one moment at a time, and we celebrate every chance we get. Today, I celebrate a new record, and God willing, I will celebrate again tomorrow and the next day. And when the inevitable next seizure comes, I will tell myself that it’s OK, because we didn’t take for granted the time in between.
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