Sawyer is a spirited, curious, loving and funny young man. He makes us laugh every single day! He loves vacations, spending time with his family and cousins, wrestling his big brother Harrison, and going out to eat. He also loves going to the movies, critters of all kinds, digging for worms and bugs outside, tide pools, talking about dinosaurs (he knows everything!), listening to music, especially Disney movie music. He loves trips to the dinosaur museum or the aquarium, and he can tell you the name of almost any dinosaur or shark you show him. He loves his service dog Cherry, and our other dog Brody. He is adored by all who know him, and lights up a room with his smile. He works hard every single day and is great at jobs! Everyone at the high school knows Sawyer! Although he prefers villains to superheroes, he is our superhero for sure.
Sawyer had his first seizure just before he turned 7 months old. Until then, he was a happy, perfectly developing baby. He had woken up from a nap and seemed limp. He was smiling and happy, but something was very wrong. That seizure lasted about 15 minutes. Then while getting examined at the hospital, he had a generalized tonic clonic seizure that was very violent and needed rescue meds. Imagine watching your perfect little baby go into a violent seizure, foaming at the mouth and there was nothing we could do. It was horrific. We had never seen a seizure before and we didn’t know anything about Epilepsy. He seized again about 6 days later, another long seizure, and he was diagnosed with Epilepsy. For the next year we were mistakenly told that Sawyer would most likely grow out his seizures and there was no real cause for concern; that they were just febrile in nature. During this time Sawyer’s seizures were getting worse, and more frequent with many trips and stays in the hospital. He had already failed two medications. We were advised to have genetic testing done and finally at the age of 2, we got an answer- Sawyer has an SCN1A gene mutation and was diagnosed with Dravet Syndrome.
As a parent, there is no preparing for that. It altered our path forever and started us on this journey navigating life with a child living with Dravet Syndrome. Sawyer is now 15 years old and continues to grow and change through his challenges but always with his amazing smile, sense of humor and great attitude. We have added and taken away many medications, and continue to wait for better treatments. He has battled countless seizures of varying kinds. Some are long, some short, some violent, some less so, but all debilitating. Now that he is older he has become much more aware of them. He always asks when he becomes alert again, “Did I have a seizure?”, while groaning and usually being pretty cranky about it! His seizures tend to always strike right when he is having the most fun like swimming, dancing, playing outside, or bowling. Some would think this would make him want to shy away from activities that are triggering, but on the contrary- he digs in and always asks when we can go again! He hates when a seizure robs him of a great time. Sawyer struggles with learning, but continues to make progress and works really hard in school. He has made amazing strides in reading, writing and math. He is so proud of his accomplishments! He loves his weekly school outings with peers in the community learning life skills and shopping!
Dravet Syndrome affects every aspect of Sawyer’s life, our family and our life. We have learned how to cope and try to live each day to the fullest through all of the challenges. We hope for better treatments and with the research being done into newer and better gene therapies, we continue to hope for a cure! We celebrate even the smallest successes. Dravet Syndrome is an unfair disease that strikes without warning at the worst times. It has shown us what is really important. We cherish our friends and family, the support from the community, DSF, and all of you here tonight. Your support means everything! Thank you for being here!!
