Making memories in the good times to get us through the bad ones

When Austen, my 7-year-old daughter with Dravet syndrome, was born, I had no idea that the disease existed, much less that it was embedded in my perfect baby’s DNA. Even when she began experiencing seizures, the next four months were like swimming in a murky lake. We knew something was ahead, but we couldn’t see what it was.

Although it was heartbreaking to get a diagnosis of Dravet syndrome, especially with its somewhat bleak prognosis, it was also a relief. We had a name and knew what was happening. We had something else as well: a timeline.

OK, “timeline” might be a stretch. It was more like the idea of one. We were told that Austen’s seizures would probably start off slowly, about once a month, and then pick up in frequency when she was a toddler. Thus, we expected many status epilepticus seizures those first few years, hoping they’d slow down for a while as she grew older.

While this timeline isn’t exact for every Dravet patient, it was pretty spot on for Austen. We did experience some lulls in the intensity of her seizures, like when we started using cannabis therapy, but overall, the pattern remained.

The only break we got was in 2019, when Austen started taking Fintepla (fenfluramine) as part of a clinical trial. After four years on the medication, we’ve managed to wean her off all others, and she had only three seizures in 2022. But this hasn’t taken away the fear that Dravet imprinted on us.

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Even though Austen is doing amazing right now, I can’t seem to forget about the timeline. The next big milestone, puberty, could be a doozy.

To be fair, many parents tend to fear puberty, even if their child is healthy. It brings many big changes, after all. But for a child with Dravet syndrome, puberty and the hormone changes that come with it can wreak havoc on seizure cycles.

There’s always the chance that Austen could completely lose the progress she’s made once she hits puberty. We could easily relive the dark times of her having up to 10 seizures a day — or worse.

But I cannot focus solely on the bad. If I did, I’d fall into a deep depression and miss all the good happening in Austen’s life right now. I also can’t put my head in the sand and forget that a decline is a possibility until it’s (maybe) too late. Instead, I’ve decided to make the most of our time.

The way I see it, the worst-case scenario is that we have three or four years until the floor falls out from under us. Instead of hyperfocusing on what our lives will look like if that happens, I’m going to fill every moment I can with memories for Austen. We’re going to go on weekend getaways with friends, plan fun vacations, and fill our everyday lives with as many normal activities as possible, like Austen playing soccer or going to the splash pad with friends.

This summer, we’ve planned a weekend getaway at one of our favorite national parks, and we’ll probably start the process of Austen’s Make-A-Wish at some point this year. We’re going to dig in the dirt, explore the world around us, and live our lives to the fullest. For her, and for us.

If Austen makes it to puberty and life goes on as normal, I won’t regret the memories we made in the years leading up to that time. But if we’re faced with the opposite situation, I can’t sit back knowing that we didn’t take advantage of the good times.

This disease makes us more aware than most that good days are never guaranteed.

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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