Kennedy May Willey’s first seizure took place when she was nine months old, on December 26, 2008. It occurred 8 days after receiving her DTaP vaccination. The seizure lasted over 40 minutes and entailed a dramatic helicopter ride to the nearest major hospital in Texas which was over an hour away. Fortunately, little Kennedy rebounded and within a few hours the doctors wanted to send her home, saying that the seizure that had nearly killed her was a “normal febrile seizure.”
Her mother Dawn knew there was nothing “normal” about it and insisted that they keep Kennedy overnight for observation. A nurse told her she was paranoid, but within five minutes she was seizing again.
Dravet Syndrome Diagnosis
Eventually, two pediatricians, one allergist, one cardiologist and no less than six neurologists later, Kennedy was diagnosed with Dravet syndrome. This was not good news. For parent or child, Dravet can be a terrifying diagnosis.
The prognosis is anything but encouraging, the mortality rate is exceptionally high — 15-20% — with most dying suddenly while asleep, and seizures are severe, lifelong, and generally bring a host of developmental, behavioral and medical issues affecting every aspect of the child’s life.
Most children with Dravet are given anti-epileptic medications, even though Dravet does not tend to be responsive to medications. After reading story after story of children for whom medications made little to no difference, Kennedy’s mother, Dawn, felt there had to be a better way.