Dravet Syndrome Success Stories: Getting My Daughter’s Ears Pierced

A seemingly small thing is a big deal in this columnist's life

Meagan Cheney avatar

by Meagan Cheney |

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When Austen, my 7-year-old daughter with Dravet syndrome, was born, I didn’t have many things in her life planned out yet. I didn’t know what school she would go to, what sports I would put her in, or what preschool she might attend one day. I’m just not one of those parents who sees their entire futures laid out before them.

There’s one thing I did know, though: For Austen’s first Christmas, I wanted to get her ears pierced. This was something we did when Austen’s older sister, 14-year-old Addisen, was a baby. Her father and I thought it would be a nice tradition to continue with Austen.

But then, in November 2015, Austen had her first seizure. It quickly became clear that it wouldn’t be a one-time thing, as the doctors had originally hoped. By the time Austen’s first Christmas came around, she’d already had two hospital stays under her belt.

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Dreams deferred

In the early days of Austen’s battle with Dravet syndrome, each hospital stay came with CT scans, MRIs, and lots of X-rays. If we’d pierced Austen’s ears, her earrings would’ve had to be removed each time, so we decided to put it off. We could do it for her second Christmas, we thought at the time.

But then we had another stay in pediatric intensive care in November 2016, and Austen’s seizures just kept coming. Holiday seasons came and went, but we didn’t believe she had enough time between seizures to risk getting her ears pierced.

In 2019, Austen started taking Fintepla (fenfluramine). Since then, we’ve been able to add more experiences to her life that we’d previously given up on.

She attends school in a general education setting, she’s played soccer, and she’s performed in her first play. She’s even gone more than eight months without a seizure, a huge accomplishment in the world of Dravet syndrome. Lately, she has been asking to do more things she sees her peers doing. Can you guess what one of those things is?

Opportunity knocks

Last month, Austen and I were out doing a bit of Christmas shopping at a local shopping center when we stopped by a store that a friend manages. The store does ear piercings, and it just so happens that my friend has a son with autism. If I trust anyone to pierce Austen’s ears, it’s this friend.

I caught myself off guard when I heard my voice asking Austen if she wanted to get her ears pierced. With her lack of seizures, I thought it was as good a time as we’ve ever had to get them done.

Austen was excited to enter the store. My friend sat her down and explained the process, and Austen didn’t even shed a tear as her new earrings were placed in her ears. She even exclaimed to the little girl in line behind her that it didn’t hurt a bit!

I know this milestone might not seem newsworthy, but it’s a huge deal in our world. Austen is constantly looking at her new earrings in the mirror and points them out to everyone she sees. She’s so happy that her ears now look like her mama’s and big sister’s. And it’s just one more drop of normal in our crazy, anything-but-ordinary lives.

It’s a drop of normal that was seven years in the making.

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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