This syndrome causes every type of seizure.  Sydney's seizures are frequent, severe, and long lasting.  Once a seizure has started, the only way to stop it is with Valium suppositories.

As her illness progresses, Sydney's mental and physical development will be affected more and more.   Many Dravet kids are non mobile, non verbal or both, and severely retarded before puberty. Sydney functions at the level of an 18 to 36 month old child.

Sydney's seizures are difficult to control.  Thought she's on several medications, she continues to have many episodes.  She may need surgery to implant a pacemaker device in her neck to transmit currents throughout her brain.  This might help some of her seizures, or it may not help at all, but her doctors have to try something to help Sydney.

Sydney has a service dog named Rooney who looks out for her and alerts the family when Sydney's in trouble.

Rooney goes with Sydney everywhere -- even to the hospital.  

He was rescued from the pound two days before he was scheduled to be put to sleep.  Now he's well trained and able to do many things like turn off lights:

Sadie is Sydney's little sister and also has an unrelated neurological problem called Severe Apraxia.  It prevents her from talking. 

Sydney's dad is a deputy sheriff.  Her mom had to quit her job to stay home and care for Sydney and her sister.  The family is in need of information about organizations that award grants which pay for things that insurance doesn't cover.   

If you can share information or make suggestions, please email Sydney's mom, Dina.  Her email address is listed with their snail mail address, a current list of interests and hobbies, and other information on our "Kids List" page.

For CURRENT UPDATES visit our updates page.

Rooney came from a nonprofit charity that helps kids like Sydney.  Visit their web page by clicking their logo below.  On their site, you see some great letters written by the kids, photos, and adorable drawings of them with their dogs.