Plum promotes epilepsy awareness
Plum Mayor Harry Schlegel was so inspired by a 5-year-old girl’s experience that he proclaimed this week that every November in the borough will be dedicated to raising awareness of epilepsy.
Haley also inspired a state legislator to name a law after her. Haley’s Law would require Pennsylvania schools to train teachers on what to do if a student has a seizure in class.
Haley’s mother, Victora Delo, remembers the day her daughter, who was 4-years-old at the time, experienced her first seizure.
“They told me ‘Your daughter is unresponsive,’” said Delo, describing a phone call she received a few hours after dropping Haley off at daycare. Delo works in the medical field, so her instinct was not to panic. She encouraged the teacher over the phone to wake her daughter up.
“I thought she must just be really tired,” she said.
But as the conversation over the phone progressed, Delo learned her child had undergone a major seizure episode, causing her to throw up while laying flat on her back. That’s when panic set in, Delo said, and she raced back to the daycare, advising them to call an ambulance.
After a month of testing and a few additional seizures, Haley was diagnosed with epilepsy.
Schlegel hopes the proclamation helps educate Plum residents on epilepsy and helps Haley experience a normal life.
“She’s just typical 5-year-old,” Schlegel said. “And she’s not even aware of her limitations. She just knows she gets a headache and then she doesn’t remember anything.”
The mayor said the borough plans to host a public seminar to raise awareness on epilepsy at 6 p.m. Dec. 6.
Delo is working to raise money to purchase Hero, a service dog that will be trained to sense the onset of Haley’s seizures. She said the dog will cost anywhere from $20,000 to $30,000. An online fundraiser has earned around $2,700.
Delo, who worked with lawmakers to draft Haley’s Law, is passionate about raising awareness.
“I honestly think this is going to save somebody,” she said. “Epilepsy is very prevalent but it’s not taught … My daughter goes to school with her brain every day. And there’s nothing we can do that can stop her from having those – when that happens teachers need to know what to do.”
There are about 3.4 million people in the U.S. living with epilepsy, according to the Epilepsy Foundation, one of the law’s sponsors. A third of those people live with uncontrollable seizures because there is no medication that works for them.
Haley takes three medications and they don’t seem to be effective, Delo said, as her daughter continues to have uncontrolled seizures. She said Haley will soon go to a neurologist for a five-day electroencephalogram to monitor her brain’s activity. The results should help doctors prescribe more effective medications.
Delo said the law shouldn’t be confused with a similar one also currently in committee. That law, called HB 1820, requires teachers to take a training on seizures and does not protect them from possible liability, Delo said.
Melissa Metz of Oakmont hopes Haley’s Law is adopted. Her daughter, Zoey, 16, was diagnosed with epilepsy nearly 10 years ago and has been seizure-free for eight months.
Through the years, Metz has developed a plan for Zoey’s Riverview teachers and close friends in case she experiences a seizure. Her plan is very similar to the one Delo has developed, which will be a guideline for training in Haley’s Law.
“Make sure she won’t hit her head during convulsions, don’t constrain them … don’t put anything in their mouth. And just lay them on their side – don’t let them get up right away. Let them lay calm for a little bit until they come back to,” Metz said.
She said a uniform law would give her and other parents of children who have epilepsy peace of mind.
Haley’s Law, introduced by state Rep. Brandon Markosek (D-Monroeville), was moved to the state’s education committee Oct. 22.
To read a copy of the bill, visit bit.ly/2QhnvXa.
Dillon Carr is a Tribune-Review staff writer. You can contact Dillon at 412-871-2325, [email protected] or via Twitter .