Bradlee was born a healthy baby and was meeting all milestones until one morning at 4 months of age when we found him unresponsive in his crib. We immediately called 911 and when EMS arrived they suggested he may have had a seizure during the night due to his immunizations given a few hours before. He spent 2 days in the PICU having every test done in which doctors came back with it being a possible febrile seizure from his shots and stating that hopefully it wouldn’t happen again.
At 7 months, he had another seizure, this one during the day after spiking a fever. When EMS arrived, he was still seizing and aspirated during it. His oxygen dropped so low that we had to divert the ambulance ride to the nearest hospital. This seizure did not stop until he was intubated several hours later. We stayed in the PICU for another several days and left with a diagnosis of epilepsy. Another seizure 2 months after this left Bradlee spending his first Christmas being life flighted to a children’s hospital. At this point we realized how severe this epilepsy diagnosis was for our child and how medicines just weren’t helping to stop his seizures.
At age 5, Bradlee was finally given his Dravet syndrome diagnosis, a diagnosis we always felt he had since his seizures began at 4 months. Genetic tests which once didn’t show the SCN1A mutation when retested finally came back with the correct diagnosis and medicines he was on had to immediately be stopped since they were ones that people with Dravet syndrome should not take.
Although a life changing diagnosis was given to our family, Bradlee has shown us how strong of a family we can be. He has taught us to persevere through some of the most challenging days and always see the best in each situation. We celebrate every small moment and are grateful for great days. Dravet syndrome won’t stop Bradlee from living his life and we continue to pray that a cure will be found for our Dravet warriors.
