The unspeakable heartbreak of losing a child to an insidious disease can leave parents grasping for answers, feeling hopeless and angry at a medical system they feel failed their child.
That was the case for C. Renzi and Lee Anne Stone who, on May 17, 2010, lost their infant son, Isaiah, to complications from pediatric epilepsy, a disease that is shrouded in mystery and misunderstanding. November is Epilepsy Awareness Month.
“If your child has a seizure today, and tomorrow you don't have a doctor's appointment, as a parent, you're upset,” Renzi Stone said. In the Stones' case, they couldn't get an appointment with a pediatric neurologist for six weeks after their son's first seizure.
That was because, then, there was only one pediatric neurologist at the The Children's Hospital at OU Medical Center. Now, there are six.
In Oklahoma, it's estimated 7,000 children have epilepsy, experts say. This statistic is arrived at by assuming Oklahoma has the same percentage of pediatric epilepsy patients as the national average. The Centers for Disease Control and Prevention website states that about 2.2 million Americans have one of the 40 forms of the disease.
State of Research in the Epilepsies Report 2013, released by CURE Epilepsy recently, states that one in 26 people will develop epilepsy in their lifetime.
Not all cases of epilepsy result in death, but doctors, families and other experts in the field want to bring epilepsy into focus by raising awareness that this disease is far too common to ignore and often brings devastating results including death, severe disability and developmental disabilities for those afflicted.
Crusading for children
During their son's treatment and after his death, the Stones have become crusaders for more specialists, more publicity and research funding for pediatric epilepsy. It's the squeaky-wheel approach they took that the Stones say helped initiate awareness that Oklahoma was woefully underequipped to treat children with epilepsy.
“OU has really stepped up,” Renzi Stone said. “They've become great partners.”
Now, the hospital has six pediatric neurologists on staff, two of which specialize in pediatric epilepsy. Integris has three pediatric neurologists, and there are three in Tulsa, said Dr. Yu-Tze Ng, the top child epilepsy neurologist at OU Children's Hospital.
As part of their quest for more understanding and funding for research, on Nov. 19 and 20, the Stones will hold the second annual Isaiah Stone Pediatric Epilepsy Lecture Series at The Children's Hospital. The lecture series is combined with a fundraiser. Last year's event raised $50,000, which helped hire and train dietitians at the hospital. This year's fundraising goal is $100,000.
The event includes guest lecturers, a luncheon with a question-and-answer panel discussion and an evening Wine and Palette Painting fundraiser. The lecture includes special guests Dr. James Wheless, medical director at the University of Tennessee Health Science Center's Neuroscience Institute and at LeBonheur Comprehensive Epilepsy Program in Memphis. Wheless will deliver a lecture titled “Non-(Antiepileptic) Drug Treatment Options.”
Susan Axelrod, founder of CURE Epilepsy (Citizens United for Research in Epilepsy, CureEpilepsy.org), will also be a featured speaker at the event. She, Ng, Wheless and Dr. Cherie Herren will sit on the panel discussion.
A lack of focus
“Epilepsy has been just woefully under-focused on and under-funded forever,” Axelrod said. Axelrod and her husband, David Axelrod, who is director of the Institute of Politics at the University of Chicago, campaign adviser to President Obama and NBC political analyst, became intimately familiar with the disease when their daughter, Lauren, now 32, began having severe seizures at 7 months.
Because of the thousands of seizures Lauren has endured, along with a barrage of drugs doctors have prescribed her, she has developmental and cognitive delays, and her parents still act as her legal guardians.