Wyatt was born on May 23rd, 2019 with the brightest smile and the biggest blue eyes. He brought his parents the most joy and they truly felt their perfect little boy was going to change the world some day.
Brave is what would describe Wyatt best from the very start. Never scared of anything he is so independent and definitely a “go getter”. He has so much courage, determination, and fight in him that it has inspired everyone he has ever met.
State of Science
In 2019, NIH funding saw a significant increase as new therapeutic approaches, such as gene therapy and antisense oligonucleotides, began to show promise. Research efforts expanded to include more clinical trials and translational research aimed at directly benefiting patients with Dravet syndrome.
Just two short weeks after his first birthday he was playing with our family dog and he had his first seizure. 40 minutes is how long the first one lasted, minutes after recovering he fell into another seizure lasting a little over 30 minutes. Wyatt was rushed by ambulance to the nearest hospital to get him stable before being transported to the nearest Children’s Hospital.
Being sent home time and time again just being completely left in the dark was probably the most devastating thing his parents could go through as they watched their child suffer and be turned away. Febrile seizures was the first diagnosis the neurologist gave Wyatt. That didn’t sit well with the parents so they kept fighting for testing. Nothing more was done through all of the different neurologists he had seen.
In March of 2022 Wyatt had two seizures back to back. After ensuring Wyatt was stable his parents drove him to a Hospital two hours away. That was the best, life changing drive and at the time they had no clue what was in store. After nearly two years of fighting and being talked down on by neurologists they finally were able to be heard. Wyatt was admitted and ran thorough testing. They did genetics testing on him which was something nobody had ever mentioned before. In April of 2020 Wyatt was finally diagnosed with Dravet syndrome.
Before DSF: Wyatt’s parents faced constant frustration, being dismissed by neurologists as they fought for answers while his seizures grew worse.
With DSF: After a long struggle, genetic testing finally led to a diagnosis, and treatments like VNS therapy and medications have given Wyatt the chance to live more freely, proving the importance of advocacy for proper care.
Hope for the Future: Families like Wyatt’s are hoping for greater awareness and advocacy, so that no parent has to fight so hard to be heard and children can receive timely, effective treatment.
Wyatt is currently sitting at over 200 seizures in less than 4 years time. He uses VNS therapy and is on medications that allow him to live his life to the ability of any other child. His life looks a little different than most, but that does not stop him from being the fierce, brave, and independent boy he was always meant to be.
All of this is written to say NEVER stop fighting for what you know is right and never lose hope. Dravet syndrome warriors are an inspiration to many and they are all so brave!
