SCHUYLER FALLS - On the surface, Evan Ormsby looks like any other 19-year-old. However, within him, he wages a constant battle with a rare heart condition.
Evan suffers from Wolff-Parkinson-White syndrome, a condition which affects approximately 3 percent of the general population. According to the American Heart Association, in a normal heart, electrical signals utilize only one path moving through the heart, known as the atrio-ventricular, or A-V node. As the signals move from the heart's upper to lower chambers, they causes the heart to beat. The timing of the electrical signals is important for the heart to beat properly.
In the heart of someone with Wolff-Parkinson-White syndrome, there is an extra conduction pathway that can allow the electrical signals to arrive at the ventricles too soon. The result can be episodes of rapid heart rhythm known as tachycardia, as well as dizziness, chest palpitations, fainting and, in some cases, cardiac arrest.
Annette and Craig Ormsby, Evan's parents, have helped their son through his condition since he was first diagnosed after suffering a heart attack at 9 years old. Since then, Evan has had several heart attacks as doctors have attempted to treat and correct his condition.
His condition worsened as he entered high school and left him constantly feeling down, said Annette. However, through the encouragement of Lisa Crane, a support manager at Peru High School, Annette said Evan pressed on to graduate last year.
"If it wasn't for her, I think he would have given up a lot of times," said Annette. "She pushed him and got him to graduate and with good grades."
However, after high school, things took a turn for the worse. Evan was scheduled to undergo surgery to correct his heart condition, which was expected to result in him being incapacitated at least three to four months. Evan had planned to attend Clinton Community College, but he and his family ultimately decided it would be best to postpone school as his recovery would have likely interfered with his getting a good start on his college education.
Consequently, the Ormsbys lost Evan's health insurance coverage because Evan was no longer considered a full-time student. When they attempted to get Evan insured through a different provider, his Wolff-Parkinson-White syndrome was considered a pre-existing condition.
On top of that, the surgery Evan underwent was unsuccessful, and he has had to continue a steady regimen of medication and consultations with doctors at Dartmouth-Hitchock Medical Center in New Hampshire and Fletcher-Allen Health Care in Vermont.
"We've been scrounging ever since to pay for his medical bills and his medicines," said Annette. "Evan's on a ton of medicine. Off the top of my head, I couldn't even tell you how many."
Some days, the stress of his condition has left Evan unable to function, said Annette.
"He might have really good days. He looks very normal. But, when he has a bad day, he can hardly get out of bed. He gets discouraged and depressed," she said. "Christmas Day we didn't do anything. He had a heart rate of over 187 beats a minute."
In order to put that into perspective, the American Heart Association states the average heart rate of a male Evan's age should be between 100-170 beats per minute. The average maximum rate is about 200 beats per minute.
"That will tire just a general person out," said Annette. "He's never been able to do sports or anything like that."
In order to help the Ormsbys with Evan's ever-rising medical expenses, including another surgery on the horizon at Dartmouth-Hitchock, family friend Crystal Stansbury of Peru is hosting a benefit next Sunday, Jan. 18, at Cocktails, 42 River St., Morrisonville. "Rock for Evan" will feature a live auction, raffles, face painting and a $5 michigan dinner. When attendees purchase a dinner, they will be entered to win a door prize, said Crystal.
The event will also feature performances by the band Bootleg, and Jar'd Spiders - a band which includes Crystal's sons Steven and Cody, as well as Evan himself. Playing bass guitar and doing vocals for the band is one activity Evan is able to enjoy, said Annette.
Crystal said she hopes the benefit will see a good turnout, considering how Annette and Craig, who own Ormsby Realty in Plattsburgh, routinely contribute to charitable causes.
"[Evan's] parents are always doing benefits and fundraisers for people in need," said Crystal. "Nobody's ever done a benefit for them. I just felt that it was time someone helped them."
For more information, including how to donate items toward the benefit or to make a monetary donation, contact Crystal at 643-2402.