This week’s guest blog post comes from Ashley Kerns. Ashley resides with her 3 children and furbaby in Lake Charles, Louisiana. Her daughter was recently diagnosed with Dravet Syndrome earlier this year. Ashley works at her family’s marine construction business, Mike Hooks, LLC. When she isn’t busy being mommy, Ashley enjoys running and traveling. Her hope is that this blog post finds its way to another desperate, crazy, mamma looking for the light at the end of the tunnel.
The day I was punched with the news of my sweet baby girl, Katie’s diagnosis, I spent the entire night scouring the internet about the SCN1A gene mutation and Dravet syndrome. All I read were words like: catastrophic; life-threatening; socially isolating; and developmental disabilities. Who on earth wants to read that about their baby? My search became desperate – looking for some kind of silver lining, hope, good news. That’s when I stumbled upon the Dravet Syndrome Foundation website and read about other amazing Dravet warriors. I finally saw words like: hope; understanding; help; and compassion.
Our life changed the day Katie had her 4 month immunizations. That evening, she had a scary 45-minute seizure. She was rushed to the hospital and we were told that this was a one-time incident, just a reaction to her immunizations. Then, another 20-minute seizure occurred a month later. We were referred to Texas Children’s Hospital in Houston and they began a series of tests. Waiting for the results were the worst days of my life. Katie was beginning to have daily episodes and tonic-clonic seizures every couple of weeks. However, I am so thankful for Katie’s team of doctors and health care professionals. We were able to get an early diagnosis and begin the appropriate treatment of her condition.
Just when I thought we had adjusted to our new normal, Dravet threw us another curve ball. Shortly before Katie turned 10 months, she had her first prolonged seizure. It lasted an hour and a half. She was sedated and intubated and spent a week in the PICU. As horrible as the experience was, there were moments when I truly felt I was experiencing a miracle. When the doctors removed her breathing tube, Katie was having trouble breathing. The doctors let me hold her and as soon as she was in my arms, she calmed down and began to improve. Then, after she was off the sedation, she was still unconscious and unresponsive for about 2 days. I was holding her when she opened her eyes and my sweet strong girl looked up at me and smiled.
Katie just adores her two big brothers, Michael (age 8) and Samuel (age 5). To her, they are the most awesome human beings on the planet. You should see how much her face lights up when she sees them. Katie covers them in big wet kisses and in turn, they just worship the ground she walks (crawls) on. The compassion and pure love I have witnessed in my two boys for their baby sister melts my heart.
I don’t know what the future holds for Katie and our family. I know in my heart I was given my sweet daughter because I was who she needed. I will do whatever it takes to care for her and give her comfort. But the thing is, she is what I needed too. Katie is teaching me to take one day at a time, count my blessings, and make every moment count. I have the best family and friends and support network. In some ways, this experience has brought my family closer together. My family is so positive and hopeful – they look at Katie and all they see is promise, beauty, and love. They are my rock, my support.
I am so thankful for the Dravet Syndrome Foundation. Finding the website at my darkest hour is what saved me from completely spiraling and losing all hope. I find strength and comfort reading other stories about our courageous warriors. It has helped tremendously learning about this mysterious condition, treatments, and what to expect. Most of all, it gives me hope knowing that our community will work endlessly at making a world a better place for our children.