On June 8, 2021; our second wedding anniversary, was the day Donovan's Dravet journey began.
Like every other morning, Donovan wanted to come into our bed for snuggles. After falling back to sleep, I woke up a little bit later and felt that Donovan was extremely warm. I woke Kyle up and sent him into the kitchen for Tylenol and the thermometer. It wasn't 10 seconds after he left the room that Donovan began to seize. We immediately called 911 and were transported to our local hospital. After some observation we were told that it was a febrile seizure, too monitor him, and know that most children only have 1 febrile seizure.
One month later, Donovan has his second seizure. This one lasted a very short time but he experienced seizure activity on his right side for 2 hours. We were transported to Cincinnati Children's where we were admitted for testing. Everything was clear. So after a short stay we were sent on our way.
Month after month Donovan continued to experience febrile seizures but I knew it wasn't just febrile seizures. Several months into the seizures and being denied genetic testing at Children's we found a neurologist at Peyton Manning Children's hospital who would do the testing. That is when we found out Donovan has the SCN1A gene mutation.
From that moment on we knew our lives would never be the same.
Since then Donovan has had countless visits to our local ER, Children's hospital, and his neurologist in Indy with three medication changes.
We are approaching our 2 year anniversary of Donovan's seizures and just recently had the officially Dravet diagnosis given to us. Donovan is the strongest little boy I know. He continues to be so resilient to his disease.
It is our goal to raise money for the Dravet Syndrome Foundation in hopes that the disease can become more manageable and maybe one day cured.
We love our Dravet Hero and all his Warriors!
Together we need to advocate for these kiddos!