Hayden Stella Reyes was a healthy 5 pounds 11 ounce little girl born on March 25, 2014. She was just four months old when she had her first seizure. We were getting her ready for her second day of daycare when I noticed she started to convulse on one side of her body. Somehow, I immediately knew what was going on even though I had never seen a seizure quite like it before. Her seizure lasted about an hour, and she was transferred to Children’s Hospital in Dallas for a full work up and tested for a number of conditions. We were sent home with no answers, but the seizures kept coming and they were closer together, having 3-4 smaller seizures in 3 weeks. After the third status seizure we were very blessed to get Dr. Sirsi as our Neurologist. She immediately knew that she was probably looking at a child that had Dravet syndrome. After genetic testing at 7 months old, we found out that Hayden has Dravet syndrome.

The next few years for Hayden were rough. Seizures were every three to six months and they were always more than thirty minutes in length and required hospitalization. She was intubated multiple times and even put into a medically induced coma just days before her second birthday when she had a three-hour seizure. On top of the “bigger” seizures, she was having hundreds of eye flutter seizures a day that would impede her ability to do everyday tasks.

We struggled with different treatments and medications over the years to try and get her seizures regulated. She had even tried the ketogenic diet, with success for three years, to help control her seizures. With the help of Dr. Sirsi at Children’s Hospital we have currently found the best medications and doses for Hayden that keep her seizures at bay and help her live as close to a normal life as possible. But even the medications that limit her seizure activity have numerous side effects such as an inability to sweat, trouble with quick thinking and cognition, word recall, and unsteady gait.

Hayden is now 9 years old and her love for life is one of the things that we admire the most about her. I truly feel in my heart that she is one of the most empathetic little girls I know because she has gone through so much herself and knows how it feels to hurt. She is currently in the fourth grade in a special needs class and attends physical therapy, occupational therapy and speech, and is making amazing progress! When she isn’t busy with school or cheer, she is keeping busy with her two siblings, Evelyn (4) and Cole (1). They are the best of friends and make so many memories together. Some of our favorite family memories are going on our first vacation to Disney World, camping and spending time together playing outside in our backyard. Hayden has taught our family the true meaning of happiness and strength, and she is one of our biggest gifts in our life! She has a lot of challenges to overcome but she is always so brave and faces them head on with a smiling face and a happy heart.