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

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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Gabriel

Gabriel

My sweet son Gabriel started off his life like any other 2-year-old boy playing with his older sister, going to daycare and having a happy ...
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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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Grace

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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Kiegan

In 2015 my life changed completely. Kiegan hit his head at the laundry mat causing a concussion and a 7-minute long seizure. The doctors thought ...
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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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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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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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