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

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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Adonijah

Adonijah (Ado), the youngest in the Family, was born a healthy boy here in Kampala-Uganda at St. Francis Hospital – Nsambya on September 20, 2018. ...
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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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6 Year Old Girl

Small head nods, almost imperceptible at 2, became more significant over months. By 2.5, was having head drops. At most, sets of 3, 6-7 times ...
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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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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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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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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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Sal

Sal’s journey began at 10 months of age. We were seeing him get “startled” a lot. We later learned they were Myoclonic seizures. Many months ...
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