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

Bennett

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

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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Zayne

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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Samuel

Samuel

After a totally normal first year Samuel had his first seizures just hours after his 1-year vaccine. They started as drop seizures and long tonic-clonic …

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Balsam

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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Oscar

Oscar had his first seizure a few weeks after his 3rd birthday, a week later another, doctors said they didn’t think he was having seizures …

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Noah

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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Tobias

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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Oliver

Ollie had his first seizure in February 2017, at 2 years old. It started with one, and then quickly escalated to 80 mixed seizure types …

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