Doose syndrome is a rare catastrophic form of early childhood epilepsy with no known cause or cure. We exist to improve quality of life and provide support for families.

Myoclonic Atonic Epilepsy

What is Doose syndrome

Doose syndrome is a rare form of early childhood epilepsy that usually begins between the ages of 1 and 5. The median age at onset is 3 years old. Children are usually developing normally prior to onset. Currently, the cause of this condition is still undetermined though it is believed to be genetic.

Learn All About Individuals Living with Doose syndrome


My daughter Grace has always been very healthy when suddenly she had hat first tonic-clonic seizure on the 4th of September 2016. After that, she …

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Tobias was a typically developing toddler until his first seizure at age 2 years, 4 months. We have no family history of epilepsy let alone …

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The first seizure was at 3 yrs 1 month. My 5 yr old daughter asked me while I was in the kitchen working “Mommy…. Why …

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Our journey started when Balsam was two and a half. He was doing yoga in our living room. As he bent himself into downward dog, …

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Zayne is a fun-loving goofy fast-paced boy. Zayne had his first known seizure on July 31st, 2020. In the coming week, things got worse and …

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Mother has Juvenile Myoclonic Epilepsy. Bennett was exposed to Valproic Acid during pregnancy. Rough birth, ICU for 1 week. Then, generally slower to develop, first …

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Whitney was developing 100 percent normal, with a fun, outgoing, spunky personality. Whitney’s first seizure was a few weeks after she turned 4, it was …

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Intense, but short-lived STORM. Noah’s first seizure was 5/22/09, and it was a grand Mal. Prior to this, he was a normally developing, very active, …

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Paul was a healthy, normal 3.5 year old boy who had just become a big brother when he had his first seizure. I got a …

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