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

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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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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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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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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Drew

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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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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Paul

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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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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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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