"And she launches into a full body convulsive state and real intense aggressive shaking," explains Piper's mom, Ashley Wood.
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But now, researchers at UCSF are testing an experimental drug that's showing exciting promise. And the tale of how they discovered it is something of a high-tech fish story.
"They're small and they're fast. So the hardest part might be catching them," said research assistant Kyla Hamling, as she loads tiny Zebra-fish into a specialized drug screening machine.
The larvae are bred from tanks in the lab and are genetically altered to have Dravet like seizures.
"No lab in the country was using Zebrafish to study epilepsy, so we had to develop all the tools ourselves," said neuro-researcher Scott Baraban, Ph.D.
Baraban says the machine's design came from trial and error in the UCSF lab. It allows them to place different test drugs into tiny wells of water, along with the fish. Once they're loaded in, cameras with tracking software project them onto the screen and help alert researchers if a drug is interrupting the seizures.
"In fact, we've screened about 3,000 drugs in a little over three years," said Baraban.
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And they've already produced several promising hits. In a small clinical trial, one of the drugs managed to reduce the frequency of seizures in a pool of nearly half a dozen patients.
"These are drugs that are already out there, we already know something about them, they've been approved for other types of disorders," added Baraban.
For Piper's family, just the promise of a new drug on the horizon is life changing.
"We can only hope the find a cure for Dravet. But in the meantime the idea that better drugs for greater seizure control is awe inspiring and exciting," says Tim Wood, Piper's dad.
And part of the credit may ultimately go to a Bay Area innovation that puts a humble fish on the cutting edge of research.
Written and produced by Tim Didion.