June means memories as well as Dravet syndrome awareness

This June, for Dravet Syndrome Awareness Month, many articles are going to give you statistics, numbers, and graphs that show how horrible this disease is. I want to paint you a different picture. I want to encourage you to remember children who’ve fallen victim to Dravet syndrome in the ultimate way — and that includes Austen, my 9-year-old who passed away with it 11 months ago.

Austen was No. 3 in a lineup of four siblings. Her birth was a wild ride that took less than three hours. She came into this world happy, loved, and healthy. Then at 5 months old, she started having seizures and was diagnosed with Dravet syndrome just after her first birthday.

Even through the seizures, Austen never lost her smile or her spark. She had a huge personality that would fill up any room. And she’d always tell you exactly what was on her mind.

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A life of loves

Austen loved hard, and if you ask our animals, sometimes too hard. One of her favorite activities was to put our cat, Norman, inside of her play oven. Other times she would use her dog, Milo, as her jungle gym, or play dentist with the puppies at her Uncle Jerry’s house. She’d open up their mouths and stick her hand right in to examine their teeth. Animals seemed to have a sixth sense about her. They knew she was different. They trusted her.

She was not a child who had many interests, but the ones she did have, she loved wholeheartedly. I’ll never forget the pink dinosaur costume that she wore for months on end, or the hours she spent dunking her L.O.L. Surprise! dolls in buckets of cold and warm water to watch them change colors.

If you’ve ever wondered what it sounds like to hear an angel sing, all you had to do was listen to Austen. She loved music and could learn anything (including her multiplication tables) as long as you set them to song. She got her piano when she was 3 or 4 and spent hours banging out her own creative tunes. Her piano still sits in my living room, its top covered by pictures of her.

Austen had friends and family whom she loved, and she had a school community that she kept on its toes with her antics. Austen did chores, she threw fits, she rode horses, and she was the first to hug a friend in need or ask me if I needed a hug or kiss if she thought I was sad. Austen was in many ways a normal 9-year-old girl — and she suffered from Dravet syndrome.

Austen’s diagnosis was a huge part of her; it affected every decision we made regarding her day-to-day life. But her dad and I operated under the motto “quality over quantity.” We wanted Austen to have as normal of a life as possible, not a life lived in a bubble. I think we accomplished that goal.

Austen was a real person, not just a number or a statistic. She didn’t live a life defined by Dravet syndrome; she lived a life that defied it. And that’s how I hope you remember her.

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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