Lacey Band to Raise Epilepsy Awareness at Stone Pony

A Lacey band will be jamming at the Stone Pony while also bringing awareness to epilepsy on Sunday, March 24.

EdgeKat, a local band made up of three Lacey boys and one from Toms River, will be participating in 50 Concerts in 50 States, a network of coordinated events around the country on one weekend in March to raise awareness of epilepsy through the power of music.

Kenneth Rapsas, 17, of Lacey Township was just five years old when his sister was born with epilepsy, a brain disorder in which causes repeated seizures.

“The beginning half of my life was at my grandparents,” he said, adding that due to his sister Mary’s ailment his parents had to spend much time at the hospital. “When she finally did come home, things were kind of crazy.”

Mary had her first seizure in 2001.

“Mary was having Tonic seizures where the body stiffens. Stares, slight shakes lasting second,” Cathy Rapsas said. After 6 months of seeing 3 different Neurologist and tests and several different seizure meds we were no better than we were from that first day in November.”

Mary actually went into cardiac arrest as a result of the intensity of a Tonic Seizure, she said. She was brought to a Comprehensive Epilepsy Center in Hackensack University Medical Center in New Jersey and hooked up to a 24-hour video monitor that lasted a month.

Doctors thought they located a focal point and that she would be a candidate for brain surgery but that was incorrect, she said.

“Something has to be done because her life was at stake. She had been on eight different seizer meds and they all failed,” Cathy Rapsas said.

In May of 2003, Mary had a Vagus Nerve Stimulator implanted. The stimulator is comparable to a pacemaker for the brain, sending stimulation via the vagus nerve to help control seizures, she said.

“Because her seizures are so hard to control we are constantly needing to adjust medication sometimes changing and trying new combinations,” she said.

Mary has been on 12 different medications to date, three at present. The battery on the stimulator has been replaced three times since 2003.

Mary is now developmentally delayed due to the seizures and had an impact on Cathy’s three other children — Kenneth, Allison and William, she said.

“Their little lives were in an upheaval from young and they learned independence at a very young age,” Cathy Rapsas said.

“At seven years old, seeing my sister taking medications and not knowing why is a little scary,” Kenneth aid. “It can be very hard at times because sometimes she has a seizure.”

But Kenneth has gotten used to the condition and now knows what to do when Mary has a seizure, he said.

“I'm not sure when it happened but I do know that we decided that we needed to start to educate and raise awareness about epilepsy,” Cathy Rapsas said.

The family got involved in the Epilepsy Foundation and has been to Washington for the National Walk and organized a basketball game called Bounce Out the Stigma for Epilepsy.

Allison became a Hope Mentor, William sold wristbands in sixth grade during November, and Kenneth’s Eagle Project at Hebrew Park was a result of his sister’s disability.

“Mary has a stroller/chair that we use for her because, although she is capable of walking and is active there are time because of her seizures she fatigues,” Cathy Rapsas said. “He saw the accessibility for her and her chair would be most challenging as well as other people.”

Kenneth installed three ramps by the pavilion at the Forked River park.

“I am very proud of him and all my children,” Cathy Rapsas said. “They have taken a positive approach to their sisters disability. Our normal is not like other people normal.”

The family carries oxygen when they travel and the kids know how to administer seizure first aid.

“It's been almost 12 years since that Fall day in November and our journey has been difficult at times but my children are strong and confident and know Mary may have Epilepsy but Epilepsy doesn't have us,” she said.

Sunday’s event, Paint the Pony Purple, will not only raise much needed money but also awareness, she said, as 250,000 people are diagnosed with seizures yearly.

“Kenneth saw a chance to help raise awareness and what a cool way to be able to do this at the legendary Stone Pony,” she said.

EdgeKat, which primarily plays alternative rock, had been trying to get a gig at the Stone Pony for a long time, Kenneth said. The band, which formed in 2011, found out about the benefit and signed up.

“Epilepsy has greatly impacted my life,” he said. “We want to raise awareness. In case other kids my age are also going through the same thing I am, I want them to know they’re not alone.”

In addition to Kenneth, the band is made up of Eddie Petruzzi, 18, and Jake Rabin, 16, both of Lacey and Matt Baily, 18, of Toms River.

The show begins at 12:30 p.m. and EdgeKat is expected to perform at 1:50 p.m.

Paint the Pony Purple will also feature Gary Hoey, Almost Easy, the RockNRoll Chorus, Michael Brett and Diedre Forrest, Patrick Stoner and Reckless.

Tickets are $20 and will be available at the door.