(KPBS) – “It was around the clock. So 50 to 100 seizures a day, all day, all night.”

Dalby was eventually diagnosed, when he was almost 5, with a rare genetic form of epilepsy caused by a mutation in the SCN2A gene.

The condition is known as SCN2A-related developmental epileptic encephalopathy, or DEE.

It’s part of a group of rare disorders in which seizures are just one piece of the puzzle. The abnormal brain activity can also interfere with development, movement, communication and everyday functioning. (Read More)