My daughter with Dravet has accomplished so much this summer

My 8-year-old continues to surpass expectations, despite her diagnosis

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by Meagan Cheney |

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As I was driving recently, I noticed the leaves were starting to turn. Here in Texas, it’s because of the drought rather than seasonal changes. But it still reminded me that fall isn’t too far off, with the start of school and Austen, my 8-year-old with Dravet syndrome, beginning third grade.

Nevertheless, temperatures in the triple digits still have us holding on to summer, and what a summer it’s been.

This year was the first time Austen swam without a life jacket 99% of the time. My rule for my older children is that they can swim without one, as long as I can see the bottom of the pool (which means lakes and ponds still require a life jacket). But I wasn’t comfortable implementing that rule for Austen — until this summer.

Austen swam in the deep end at friends’ pools and in the shallow part of our favorite lake without any issues. She even passed the swim test at our city pool without a life jacket, allowing her to jump off the diving board with no limitations. She jumped, dived, and flipped all summer long, to the delight of our entire family.

Speaking of jumping, she also conquered the two-story deck at a friend’s pond. I did make her wear a life jacket for this one, much to her dismay. But my fearless warrior jumped off again and again without any hesitation, other than to ask if I was filming.

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Surpassing expectations

All of these summer steps might not seem like a big deal to parents of neurotypical children, but they’ve been huge accomplishments for Austen and for us as her parents. For her to be able to do these activities without seizures still amazes me, even four years after she started Fintepla (fenfluramine).

I’m equally amazed that Austen’s dad and I are learning to relax and allow her to attempt these feats. I used to stress about her swinging on a swing by herself; now I let her play outside alone, as long as she’s within my sight.

Even though a bout of COVID-19 caused her to have a seizure in early August, Austen has continued to grow and thrive despite her Dravet diagnosis. At every turn, I find myself in awe of what she’s accomplished in her young life. She’s always surpassed experts’ expectations, and now, with her newfound swimming and diving skills, she’s soaring past them, too.

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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