I never imagined our Dravet journey would end like this

In February 2016, I learned about Dravet syndrome from a Google search. My youngest daughter, Austen, then only 8 months old, had been having seizures for the past three months and we couldn’t figure out why. We’d been informed that two-thirds of people with epilepsy never know what caused their condition, but I was convinced we wouldn’t be among those numbers.

I remember knowing almost instantly that Dravet syndrome was our “why.” It would take changing neurologists and hospitals to get the proper tests ordered, but I knew in my heart that this was the right diagnosis. So I dove into making plans and preparing myself for life with a sick kid.

One of the first statistics I found wasn’t good. According to the Dravet Syndrome Foundation, patients with the condition face a 15%-20% mortality rate. Studies show that roughly 73% of those deaths occur before the age of 10. So I made a deal with Austen, who wasn’t even a year old at the time, to try our hardest to get her to 10. I felt that if we could get her there, we could probably keep her through adulthood.

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Over the years, I must’ve imagined what it would be like to lose her a million times. Every time I saw a post about another child lost, I cried, mourned, and begged God to spare my baby. During every hospital stay, blood draw, and seizure, I poured my heart out and prayed that God would keep his hands on her, that Austen would make it through. I always believed she would.

At the same time, I thought I’d prepared myself for the possibility of losing her. When your child has a disease that could kill them, that thought is never far from your mind. There were times when we came close. At one point, I even planned her funeral with our parish priest.

But I was wrong about her always pulling through, and I was wrong about being prepared. There’s no such thing as being prepared for your child to die.

On May 29, 2024, I took Austen to her last neurologist appointment, where we upped her medication to the maximum dose. After years of amazing seizure control, she’d started having breakthrough seizures, and we were concerned that the Dravet monster was rearing its ugly head again.

I remember crying to both her doctor and my husband that day because I was suddenly terrified that I was losing her. I was scared the medication change wouldn’t work and I’d somehow have to figure out how to live life without her. Then, a month later, she was gone.

Austen passed away on June 29, 2024. She was 9 years, 1 month, and 10 days old.

It’s been over seven months since then, seven months without holding her hand, smelling her hair, or hearing her ask, “Mom, do you need a hug and kiss?” It’s funny the things you miss. I’d give anything to calm just one more tantrum.

Recently, I’ve started dreaming about Austen. I see her face, sometimes at age 9, sometimes younger. I see her laughing and dancing. Last night, I heard her singing. She’s still with me, in spirit if not in body. And I know without a doubt that I will see her again. I know she’s no longer in pain, and no longer suffering. I know that as sad as we are without her, she is wholly happy in the arms of Jesus.

My life is completely different than I ever imagined, but I know I will make it through. We all will, somehow, in some way.

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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