Childhood Epilepsy: Finding the Sunshine
Meet Stephanie. She’s the type of friend, sister, aunt, and neighbor that everyone wishes they had. It’s rare to see her face without a smile on it. Her blue eyes light up a room. And her contagious laugh can ease any situation.
You can count on Stephanie for ANYTHING. Whether it’s an impromptu dance party, mud run, or a game of touch football, she’ll be there. But more importantly, she’s always the first person to drop everything to help her friends and neighbors. Below is a picture of Stephanie with all the containers she could carry, plus her tiny Hailey, to help bail out a neighbor’s flooded basement. And, of course, she’s doing it with a smile.
About 18 months ago, Stephanie gave birth to Hailey Rae, her third baby. Hailey was perfect and immediately became Stephanie’s little ray of sunshine. Stephanie and her husband Nate were so excited to be home with their little baby. But then they lived every parent’s worst nightmare. Within an hour of bringing Hailey home from the hospital, Hailey had a seizure.
Stephanie’s world came crashing down as she helplessly watched her baby’s little body jerk and stiffen uncontrollably. Her heart broke as paramedics rushed Hailey away in an ambulance. All of the excitement of a new baby was shadowed by fear for her sweet baby.
The doctors said Hailey would probably grow out of the seizures. So Stephanie waited and hoped for things to get better, but the seizures didn’t stop.
After lots of tests and different medications, 18-month-old Hailey had 22 full tonic clonic grand mals and too many myoclonic jerks to count. “There are no words to describe seeing your baby having a seizure. You feel absolutely helpless and my heart breaks on every single one of them. It will never be something I will get used to,” said Stephanie.
Below is a video of Hailey having a seizure. As a warning, it’s hard to watch. Moms, only press play if you’re prepared to cry.
After months of trying to “figure her out,” Hailey’s neurologist decided to do snc1a gene testing in January of this year. He didn't tell Stephanie much about it, only that it was a very thorough test, and if she did have the mutation in her gene, she wouldn’t ever grow out of the seizures. So they did the test and anxiously waited for the results hoping they would come back negative.
After weeks of waiting, they got the phone call that would change their lives forever. Hailey did, in fact, have the mutation in her gene. “Then I heard the words I wish I had never heard, ‘She has been diagnosed with Dravet Syndrome.’ Up until that point, I had never heard of it. As I read further into this horrible disease, MY WORLD STOPPED! This cannot be real life. I am in a dream.”
After talking with Hailey’s neurologist, it became all too clear they were not in a dream. This was real life and Dravet Syndrome was Hailey’s new reality. Dravet Syndrome is essentially a very rare, incurable, serious epileptic condition that will affect every aspect of Hailey’s life. At around two years old, Hailey will begin to experience more frequent Dravet seizures (some children experience 100 seizures a day). You can learn more about Dravet Syndrome here.
While absolutely devastated by the diagnosis and overwhelmed with the prospect of watching her perfect baby deteriorate before her eyes, Stephanie—in true Stephanie fashion—got to work helping other kids like Hailey.
She became an advocate for HB105, a bill that would give children in Utah access to cannabis oil. As conditions like Dravet Syndrome have very limited treatment, cannabis oil will add quality years of life to children with epilepsy. With Stephanie’s help, the bill passed to the relief of countless parents with epileptic children. You can see Stephanie’s interview on Utah news below.
Often the people who are first to serve are the last to ask for help, and Stephanie is no exception. Over the past 18 months, medical bills have piled up and will continue to grow. For those who know Stephanie and her sweet family (and those who may not), a foundation has been set up to help pay for Hailey’s medical expenses.
For those who would like to contribute to Hailey’s treatment, click here.
While the thought of Hailey's illness is completely heartbreaking, we want everyone to know what a sweet, happy little girl she is. Watch the video below to see why Hailey Rae is a ray of sunshine to her family.