More Than Hugs

The other night at dinner, our 10-year-old daughter, Rebecca, had what we think was her 10,000th epileptic seizure. It was a split-second drop seizure, which sucked the air out of her body and sent her head crashing face first into her plate of pasta.

As usual, Rebecca wiped the food off her face and reached out for a hug. After checking for missing teeth, my wife and I hugged her as she fought off the tears and smiled. She's a resilient kid, but she needs more than hugs from her helpless parents. She, like millions of other people with epilepsy needs a cure for this devastating disease, which has compromised her young life despite the best efforts of her doctors, 24 unsuccessful drug trials and a dozen experimental therapies.

Fifty million people worldwide suffer with epilepsy, including 3 million in the United States alone. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Every year, an estimated 50,000 deaths occur nationwide from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP) and other seizure-induced causes such as drowning.

In this era of major medical advancements, surprisingly little is known about why epilepsy occurs in so many adults and children. Two thirds of those diagnosed with epilepsy, including Rebecca, have seizures classified as "idiopathic," which means doctors have no idea why they occur, sometimes as often as 100 times a day. Epilepsy is frequently misdiagnosed, as well, and the subsequent delay in treatment makes successful seizure control even more unlikely.

When we first witnessed Rebecca's seizures as an infant, our pediatrician dismissed her violent body movements and muscle jerks as nothing out of the ordinary and attributed them to her being gaseous from indigestion. Eight months later, a pediatric gastroenterologist told us she didn't have acid reflux; she had epilepsy. We needed to see a neurologist.

While some people with epilepsy are fortunate enough to achieve seizure control or outgrow their seizures, one third do not. Most patients endure serious side effects from drugs and treatments such as surgery. And the impact of uncontrolled seizures and drugs on children like Rebecca often causes lifelong learning deficits and developmental delays, which makes finding the right schooling and appropriate level of care a significant challenge.