My daughter with Dravet syndrome can now read to me

As a parent of three, I took many experiences with my two oldest kids for granted. But because my youngest, Austen, has Dravet syndrome, I thought many of them — like swimming on her own, discovering new toys, or even completing a full week at school without needing to come home due to a seizure — wouldn’t happen for her.

In time, and thanks in large part to Fintepla (fenfluramine), these have happened for my 8-year-old daughter. There are times now when I’m caught off guard by how “normal” Austen’s life has become.

Take tonight, for example. I was tucking my two younger children into bed when Austen asked me to read a book. I pulled one out, cuddled up next to her, and began to read. But Austen was reading, too — ahead of me. She began to read aloud right alongside me.

It took me by surprise — in a good way, of course. But once again I found myself in awe of this little girl who has beaten the odds at every turn.

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In September 2020, I wrote about Austen’s first successes with reading. We had just hit our one-year mark on Fintepla, and I was amazed at how far she had come in such a short time.

Back then, every little success was a big deal to us. For the first four years of her life, every accomplishment was followed by a round of setbacks. We believe her learning almost stalled completely during “the dark times,” when she was having multiple seizures a day. But with the freedom from seizures Fintepla has given us, the successes just keep coming.

And now she’s not just learning to read; she’s actually doing it. She might not be at her grade level, but she is reading. And she loves it!

Every week, Austen comes home with new books from the school’s library and devours them all in one sitting. And reading isn’t the only thing she’s accomplishing at school. This year, she’s spent more time in general education each day, her work is closer to grade level, and her spelling lists are longer.

And although there have been some tears when she decides her work is too hard, overall, her school does an excellent job of meeting her educational needs. They know when to push and when to give in. They are sparking a love of learning in her that grows as the year goes on.

Once upon a time, I noticed every little success that Austen achieved. Today, I think I might miss more than I notice. But I don’t feel guilty about that; I feel blessed. I’m blessed that she’s doing so well that some of her achievements slide past me, and that I still notice the big ones as they come.

Tomorrow night, I think I’ll let Austen read the bedtime story to me.

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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