Happy 6th Birthday, Austen!
Something crazy is happening this week. Somehow my daughter Austen, the baby who must have only been born yesterday, is turning 6 years old. I can’t let myself believe it, yet I must.
This little girl has been a surprise from the moment I found out I was pregnant with her. She was born in a whirlwind after only three and a half hours of labor. She had a full head of hair, and arriving 11 days early, she was the largest of my babies, weighing in at 7 pounds, 14 ounces. To us, she was perfect.
Five months later, our world was shattered. Austen had her first seizure, then her second, third, and fourth — all within 48 hours. Month after month, they kept coming, until she was finally diagnosed with Dravet syndrome soon after her first birthday.
A move to Colorado, where medicinal cannabis is legal, followed. We would do anything to keep our baby happy and healthy. Cannabis worked for a wonderful 18 months, holding Austen’s seizures to roughly one every three weeks or so.
Then, her third birthday approached, and the floodgates opened. She had seizure after seizure, eventually landing us at seven to 10 tonic-clonic seizures a day. It was a 15-month roller coaster that wouldn’t let up.
Our poor baby suffered. She stopped being potty trained, and cried and cried as the turmoil in her brain raged on. But through it all, she fought. She stayed her spunky self day after day, singing and terrorizing us in the moments when she wasn’t seizing.
Then, last June, the U.S. Food and Drug Administration approved the medication Fintepla (fenfluramine) for patients 2 and older. So far, it has been our golden ticket, as it’s shown the most success in stopping her seizures. With it, we’ve gone as long as five months between tonic-clonic seizures — an achievement we never imagined we’d reach.
In the last six years, Austen has been through countless hospital stays, six failed medications (including THC and CBD), echocardiograms, blood draws, and too many doctors’ appointments to count. We’ve been told that she may need a G-tube, and that she may never wake up from sleep, walk or talk again, or learn to read and write.
Through it all, Austen has defeated the odds.
As her sixth birthday approaches, she is learning to read and can count to 100 by ones, twos, fives, and tens. She can do simple addition and sing any song she hears only once. She loves hard — sometimes too hard, if you ask her cousins — and can argue with a brick wall. She might be a little ataxic and fall often, but she always picks herself up and never seems fazed by the hurdles life throws at her.
Austen is my rock. My hero. I am so grateful for the six years God has blessed us with her. I don’t know what the next six will bring. I don’t even know if we’re guaranteed six more. But I know that Austen has taught me to cherish every day and every moment I am granted with her. And that’s exactly what I’ll do.
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.