The Risk of a Seizure Is Always Present With Dravet Syndrome

Meagan Cheney avatar

by Meagan Cheney |

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Regardless of how long my daughter Austen goes without a seizure, the risk is always there. Without a cure for Dravet syndrome, that risk will always exist in the shadows, lurking and hiding, and waiting for the perfect circumstances to jump out and wreck our day.

One hundred and sixty-seven days.

Austen made it 167 days without a seizure. To put that into perspective, 178 days passed from the day Austen was born to her very first seizure over five years ago. And this is the longest stretch she has had since then. 

In the past, we’ve gone as long as 80 days and as little as 12 hours without a seizure. 

This time, I had hoped we would make it six months. I had even allowed myself to imagine Austen making it one year. Instead, I’m sitting here, 167 days after her last seizure, once again adjusting oxygen levels, checking her temperature, and holding my baby as we both cry.

For her, the tears are because she’s confused, possibly in pain, and bone-tired from what her body has been through. For me, it’s because I can’t take this pain away from her. 

As normal a life as possible, for as long as possible: That has always been our goal with Austen. 

We’ve always said that 100% seizure freedom wasn’t our goal. But in the last 167 days, I had begun to imagine, to hope, that it could be a possibility for us.

In that time, Austen has done things I wasn’t sure she’d ever do. She’s gone on adventures, started learning to read, and had her first sleepover. 

As my baby girl sleeps next to me now, I’m burying my sorrow in a large bowl of popcorn and a cup of hot tea. Once again, like so many times before, I repeat the now rhythmic pattern of knitting a stitch on the blanket I’m making, then looking down at her pulse oximeter.

Stitch, look down, stitch, look down. 

I say a silent prayer thanking God that this seizure was not “the big one,” the one that might someday take her away from us either in body or spirit. 

Austen will probably sleep straight through tomorrow morning. She’ll be cranky tomorrow as her brain tries to reconfigure itself after the ordeal it’s been through.

My prayer is that tomorrow will be the first in a long line of seizure-free days once again; that Austen will continue to learn and live without the struggles of multiple seizures a day. 

But if that’s not the case, if this is the start of a downhill slope where we once again see seizure after seizure, we will deal with it. 

We’ve done it before, and we can do it again. No, we don’t want to, but we didn’t want our daughter to have Dravet syndrome, either. You do what you have to do for your baby. You adapt and roll with the punches. One thing we never do is give up. 

As long as she’s breathing, as long as her heart is beating, there is hope. And hope is a powerful thing.

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