Before his death, Isaiah's parents had never known him to have a seizure at night.
Isaiah died of SUDEP, or sudden unexpected death in epilepsy. Wilfong said most epilepsy-related deaths are caused by accidents. For example, a person with epilepsy may be driving and have a car accident, or may drown while swimming.
SUDEP is rare but something feared, in part because of how much is unknown about it, Wilfong said.
“Another fear that practitioners and families and patients living with epilepsy live with is that people can die with epilepsy,” Wilfong said.
During SUDEP, a person with epilepsy's heart stops, and they stop breathing. There's still not a good understanding of why people experience SUDEP, he said.
It's more likely to occur in people who have severe epilepsy and have failed medicines.
More than 30 drugs are available to treat epilepsy, but only 60 percent of the time are they found to be effective, Wilfong said.
Forty percent of children and adults with epilepsy will continue to have seizures.
And the disease is costly to treat. Renzi and Lee Anne Stone estimate they spent about $45,000 in 11 months on travel and health care, among other costs associated with having a child with a chronic disease.
Including what their insurance paid, the cost was about $120,000.
The Stone family is rare — Renzi is the CEO of Saxum, an Oklahoma City-based strategic communications company, and Lee Anne is youth director for Leadership Oklahoma.
Although they had good jobs that helped provide financial stability, many families with children with chronic diseases don't. About 90 percent of Ng's patients are on SoonerCare, Oklahoma's Medicaid program.
“We had hospitals calling to collect for a year after he died,” Renzi Stone said. “It was a financial event in our lives that was not inconsequential.”
Lee Anne Stone has come to accept Isaiah's death. That doesn't mean she doesn't have moments when she's angry or upset.
But on Tuesday, the lecture series was a night she looked forward to.
“This is why we're doing something right now — the Isaiah Stone Lecture Series — is because we believe that's kind of our calling, not only to honor him but to help others, and that's what God wants you to do, is to honor him and help others as well,” she said.
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