Pediatric epilepsy isn't something you see awareness ribbons for.
There isn't something like a pink rubber bracelet, which immediately makes you think of breast cancer.
But after losing their infant son to the disease, Lee Anne and Renzi Stone want more Oklahomans to understand pediatric epilepsy.
And they want parents and caregivers of children with epilepsy to know they're not alone.
The Isaiah Stone Pediatric Epilepsy Lecture Series is one of many things that the Stone family has done to remember their son. The series brings in experts on the disease to educate medical students, parents and caregivers. Isaiah Stone was only 11 months old when he died May 17, 2010, from complications related to pediatric epilepsy.
Epilepsy is a chronic neurological condition characterized by recurrent seizures, according to the Centers for Disease Control and Prevention.
It's a disease with a range of hit-or-miss mediciness. It's expensive to treat and not entirely understood by doctors and scientists.
There are still many mysteries in neurology and in how the brain works, said Dr. Angus Wilfong, the medical director of the comprehensive epilepsy program at Texas Children's Hospital.
“It's really the final frontier in medicine,” Wilfong said. “We know how the heart works. We know how your kidneys work, but we're still searching for ... how the brain works, and diseases that impact the brain, like seizures and epilepsy, we're just beginning to scratch the surface how these diseases are occurring.”
Isaiah Stone was born June 15, 2009. He had his first seizure, lasting 22 minutes, when he was four months old in October 2009.
The family quickly made an appointment with a child neurologist, but they would have to wait weeks to get any answers. Isaiah's appointment wasn't until Jan. 5, 2010.
“For a parent who's just witnessed their child have a seizure, 24 hours, much less 24 days, or in our case 55 days, until an appointment is unacceptable,” Renzi Stone said. “We let OU know that it was unacceptable, and they agreed, and they've made huge strides to addressing that problem.”
At the time of Isaiah's first seizure, there weren't as many child neurologists in Oklahoma. Nationwide, there is a shortage of child neurologists, especially doctors who understand pediatric epilepsy.
Dr. Yu-Tze Ng, the director of epilepsy for OU Children's Physicians, said the facility now has four child neurologists and soon will have a pediatric neurosurgeon.
“The average (wait) time in this county is three to six months, really, up to year,” Ng said. “I'm pleased to say that we're down to less than a month here at Children's because of having successfully recruited child neurologists.”
Isaiah Stone died in the middle of the night from a rare epilepsy-related complication.
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.