Epilepsy is "rarely" fatal but it still can take away loved ones

Doug and Julie Hutchison knew that for their daughter, living with epilepsy would never be an easy thing. But the family's neurologists, doctors and research never explained that an epileptic seizure could result in the Chelsea's death.
"We tried to do everything in our power to find out why she was having seizures," said Julie Hutchison, Chelsea's mother. "Never in our wildest imagination did we think we would lose her."

Chelsea was diagnosed with epilepsy shortly after her 11th birthday. For nearly five years, Chelsea experienced two or three epileptic seizures every year. Early this year, things got much worse. The number of seizures increased dramatically.

Then in April, for a reason that is still unexplained, Chelsea died during a seizure. She was just 16 and a half years old.

The family's grief counselor, Linda Coughlin Brooks, can empathize; her daughter, Carrie Ann, died with the same unexplained circumstances as Chelsea did. Carrie Ann died 12 years ago this December at just 17 years old.

"I felt totally blindsided. I had no idea," said Coughlin Brooks, a counselor at The Grief Journey in Greenwood Village. "It kind of set me on a path to learn more about it and why I hadn't heard about it. It was totally foreign to me. I felt betrayed that you could die from it. I believed epilepsy was something you lived with, not something you died from."

After researching Carrie Ann's death and discussing possible causes with Arapahoe County Coroner Dr. Mike Doberson, Coughlin Brooks discovered a syndrome called SUDEP, or Sudden Unexplained / Unexpected Death in Epilepsy.

"Typically our bodies don't read the textbooks," said Doberson. "They don't always follow the rules. It's up to us to try and come up with answers."

Earlier this year, after a collaborative study about SUDEP in Colorado, Hutchison says more than a dozen unexplained deaths were pinpointed to unexplained death in epilepsy.

"Very quickly what we found were that the major at risk factors included being a male, being through a recent stressful event or not taking medications appropriately, to the point where anti-seizure medications are at a sub therapeutic level," said Doberson.

While research cannot bring Chelsea or Carrie Ann back, their parents hope that it will inform parents or family members to those with epilepsy of the deadly circumstances that could come from a seizure.

"We're so strongly committed to doing something on her behalf because she was such an extraordinary girl," said Doug Hutchison, Chelsea's father.

To make a donation to SUDEP awareness, or to simply get connected to a SUDEP community in the Metro Area, click onto http://www.griefandgrowth.com/