Looking Back on a Year With Dravet Syndrome Amid a Pandemic

Meagan Cheney avatar

by Meagan Cheney |

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As of March 25, my husband and I are as immune as can be to COVID-19, as we’re two weeks past our second dose of the vaccine.

It’s been a little over a year since the pandemic started, and what a year it has been. 

On March 13, 2020, we decided to take our kids out of school because we feared the spread of the novel coronavirus. In the past, seemingly benign adenoviruses have put my 5-year-old daughter Austen in the pediatric intensive care unit because of her Dravet syndrome. We were terrified imagining what COVID-19 could do to her.

This past year has been surreal. I had been looking forward to all three of my children being in school for the first time. I imagined being able to keep my home clean for more than a few minutes, and being able to have a cup of coffee in silence while they were away at school each day. Now all three are at home. I’m a teacher as well as a mom, and it’s safe to say my house is never really clean.

The last year has been scary. We’ve been lucky that COVID-19 has not made its way into our house. My husband has had to quarantine in the bedroom twice, but we’ve managed to keep the actual virus at bay so far.

Yes, this year has been crazy. But it hasn’t all been bad. It’s been a year of bare grocery store shelves and toilet paper shortages, and we’ve had more than one meltdown between the kids and me.

But thanks to Fintepla (fenfluramine), a recently approved add-on treatment for Dravet syndrome, it’s been the year with the least amount of seizures for us. Austen has had only four tonic-clonic seizures since the pandemic started. And she continues to go longer and longer in between them.

As I look back on a year of the pandemic, I realize we’ve had it pretty good. We haven’t personally lost anyone to COVID-19, while several friends have sadly lost their parents and grandparents. My kids are missing out on school, but their education is still going strong. Things like physical therapy and occupational therapy have been put on hold, but Austen’s gross and fine motor skills have not regressed nearly as much as I feared they would.

We know we are not out of the woods yet. Although my husband and I are vaccinated, our kids aren’t. We worry we could still spread the virus to them. So for us, it’s still lockdown. We pick up groceries and interact mostly with our little pod of one other family.

Preliminary research has shown that Dravet syndrome kids are not necessarily at a higher risk of contracting COVID-19, but I still know many who have spent weeks in the PICU because of it. So safety comes first for us.

We may not be out of the woods, but we see the light at the end of the tunnel. Dravet syndrome has made this a very scary year for us, but it hasn’t taken us down.

I’m not sure if we will be fully back to normal by March 2022, but there is one thing I’m certain of: We will continue to do whatever is necessary to get us there. And it’s all worth it, in the end, to keep Austen safe. 


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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