FOX CHAPEL, Pa. -- Emma Bursick was only 7 years old when she died in her sleep from SUDEP (Sudden Unexpected Death in Epilepsy).
Rarely recognized by medical examiners, the risk could be as high as one in 100, but parents aren't always told of the dangers.
Her parents are hoping to change that.
"Emma was a happy kid. She required very little out of life except just to be fed and played with and put to bed and loved," said mother Shannon Bursick.
Bursick, diagnosed with epilepsy at six months, went to sleep on July 14, 2008, and never woke up.
Therapies and medications were never able to control her condition and the Bursicks were never told about SUDEP.
"There are things Joe and I could have done or had the choice to do differently and we didn't have that choice because we weren't given the information that we needed," said Shannon Bursick.
The medical examiner initially couldn't determine why Emma died.
There was no indication of a seizure when her parents found her, prompting a full autopsy.
It was during the autopsy that Children's Hospital pediatric neurologist Dr. Deborah Holder suggested SUDEP as the cause of death.
"We know that patients who have epilepsy, especially patients who have seizures that are difficult to control, have a risk of sudden unexplained death," said Holder.
Holder admits controversy swirls around the issue of whether to inform families of SUDEP because parents of kids with benign types of epilepsy may worry for no reason.
"I usually tell patients. I only met Emma's family once very briefly and didn't have a long-term relationship with the family. In my practice, I tend to see more refractory patients. Most of my population is that 30 percent that is more at risk," said Holder.
Holder is calling for more research since there is currently no way to prevent SUDEP.
That would mean more funding for epilepsy, something Emma's grandmother, a registered nurse, agrees with.
"I think part of why it is not well-funded is because it is not discussed," said Jan Boyd.
Part of that includes creating the Emma Bursick Memorial Fund, which the Bursicks started in January to raise awareness and money for research.
"What drives us is to not have people live the nightmare we have been through. Somehow Emma gives us strength to do so," said father Joe Bursick.
The Bursicks will hold their first fundraise July 11 in Indiana Township.
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