Story about Dravet Syndrome .

Hope for Daunte.

Jun 23, 2026

By:


Shortly after my sons 6 month shots he had a very high fever and had his 1st tc seizure. Then he kept having them despite not having a fever until after the seizure had already occurred. It confused all of our doctors and they categorized them as febrile seizures until his second birthday when he went into a four day status seizure which landed us in Boston children's hospital. They ran every test imaginable to try to find out why . They put my son on 2 different meds before we left the hospital and gave us the diagnosis weeks later. His seizures have mutated into several different types and despite being on several meds he is still not completely seizure free.

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