An inspiration to those with epilepsy( Faneca)- NY Times

Jets Lineman an Inspiration to Those With Epilepsy

Alan Faneca with the Robledos family, which has a child with epilepsy, during a visit he hosted at Pittsburgh Steelers training camp in 2007.

By GREG BISHOP
Published: November 6, 2008
FLORHAM PARK, N.J. ? The Epilepsy Foundation of Western/Central Pennsylvania received an unusual e-mail message in 2004.

Using the ?contact us? tab on the organization?s Web site, an adult who lived in the area wanted to volunteer and work closely with children. The man knew what they were going through. His first seizure came on Christmas Eve during his freshman year of high school.

The name at the bottom of the note nearly caused the employee reading it to fall from the chair. ?Sincerely, Alan Faneca,? it said.

The foundation has four offices, all in the heart of Steelers country, and here was Faneca, the Steelers? perennial Pro Bowl guard, asking to volunteer, unprompted, for no reason other than that he had excelled with epilepsy, not in spite of it.

?Very few people in the public eye who have epilepsy are willing to publicly talk about it,? said Judy Painter, the foundation?s executive director. ?Alan gave so much hope to other people ? people I don?t think he ever expected he would help.?

Like Nick Cardello, 62, from Pittsburgh.

Cardello grew up watching Mean Joe Greene and Lynn Swann and Terry Bradshaw, Steelers who were so good, he said, ?you couldn?t not watch them.? Before Faneca went to the Jets this off-season, he was Cardello?s favorite player, a punishing left guard whose lack of glitz and glamour suited Steelers fans.

At 18, Cardello came home from the movies and woke up on the kitchen floor, his parents and policemen standing over him. When Cardello received a diagnosis of epilepsy, his doctor leaned across the desk and looked Cardello in the eye and told him to never mention the word again. At least not if he wanted insurance, or steady work.

?I was terrified,? Cardello said. ?I felt like a freak. You live scared that somebody is going to find out, and they?re going to think less of you. You?re living in the shadows.?

Epilepsy is a chronic neurological disorder characterized by recurrent seizures, and for more than 40 years Cardello kept his condition hidden from everyone but his family.

That was until the day his wife dragged him to a charity walk for epilepsy, where she and their daughters wore T-shirts that read, ?Nick?s Chicks,? and he wore one that said, ?I?m Nick,? and there, right in front of him, was the largest human being he had ever seen. Alan Faneca, in the flesh.

?He changed my life,? Cardello said. ?I didn?t even spend 10 minutes with the guy. At that moment, standing next to him, talking, shaking hands, finding out what he did, is the moment that I decided, no more. I don?t care who knows.?

Faneca was at a family gathering in Texas the first time he had a seizure. He woke up in the middle of the night and ran crying through the house. He had a second seizure within a week.

Faneca?s family knew nothing about epilepsy, same as Jennifer Shuckrow and her husband, Alan.

The Shuckrows were living the perfect life a few years back. Alan Shuckrow had been named a partner in his law firm. They had a healthy son named Zachary.

Along came Abigail, their beautiful baby girl, who started having seizures at 2 months old, sometimes 100 or more a day. She has a rare seizure disorder that stopped her development. She will never walk or talk or see.

It took more than a year for the shock to wear off, especially for Zachary, whose world shrank because his family rarely left the house.

He met Faneca at Steelers training camp and took home an autographed football, which he carried around for weeks.

The Shuckrows are such Steelers fans that Jennifer said she learned to count in sevens and threes before she could walk. And there they were, at training camp, as one of the most feared guards in football told them about his family?s unending support, about his own daughter?s struggle with a similar condition.

?That was the first good thing that came from her seizures,? Jennifer Shuckrow said. ?It was not about the example he set for our daughter. It was about what he told our son.?

When Faneca speaks about living with epilepsy, he tells the story about the time he woke up one morning, had a seizure and, feeling the need to go somewhere, rushed to school in the same ratty shirt and shorts he wore the night before.

Over time, doctors were able to control Faneca?s seizures with medication. The last one he had was when he was in college. He split his head open on a desk.
Faneca knows the stigmas attached to epilepsy remain. Same as Mike Harmon, a Pittsburgh resident whose son Austin was sometimes not invited to his classmates? houses because their parents worried he might have a seizure.

Austin found out about his epilepsy at age 5. In 2006, when he met Faneca at training camp, Austin was already raising money for the foundation. He was 10 years old.

Austin brought a jersey for Faneca to sign, which sparked an idea that led to signed jerseys from Sidney Crosby, the Penguins star, and Jason Bay, the former Pirates player now with the Red Sox.

The Harmons put the jerseys up for auction each year, and last year they fetched $17,000 for all three.

?Austin is a sports nut,? Mike Harmon said. ?He became a hero in school after he met Alan. It helped with his acceptance.?

Faneca did not limit his involvement to one organization. He works with the Epilepsy Foundation of America and plans to aid local organizations, maybe even by filling out another ?contact us? form.

Along the way, Painter said, Faneca shattered epilepsy stereotypes ? that people with epilepsy cannot play sports, are different, less intelligent or abnormal.

?There is so much stigma still attached to the word epilepsy,? Painter said. ?We deal with that in young people who are diagnosed. We deal with it every day.?

Faneca also inspired other activists, like Bridget Green, a 23-year-old from Pittsburgh who was an intern with the foundation.

At a run-walk two years ago, she noticed that Faneca arrived straight from practice, still sweaty, wearing gym clothes. He stayed for hours, signing autographs, taking pictures with the crowd. The foundation had no idea he was coming.

Now, Green serves on the National Youth Council. Her goal? ?For me to advocate that way, like him, would be a dream,? she said of Faneca.

?He doesn?t do the whole ?I?m-an-athlete, that?s-why-I?m-here-for-you? thing,? Green added. ?He does the whole, ?I?m an individual with epilepsy. I?m part of your community.? It?s hard to put into words his impact.?

When Faneca was told what Green said, his eyes showed the slightest hint of watering. He paused, then said, ?It?s a little overwhelming.?

Few fans were more heartbroken when Faneca left for the Jets after 10 seasons with the Steelers than the folks at the foundation. Zachary Shuckrow broke down in tears.

They continue to watch Faneca on television, hoping to glimpse the familiar No. 66. They wear T-shirts that read ?Faneca Fans? and ?Faneca Fanatics.? And they think about the man who changed their lives simply by telling his story.

?Courage and integrity and impact,? Painter said. ?That?s Alan. And I can guarantee you that he would never have known about that impact when he wrote that little e-mail to our foundation. I can?t explain how much it means that he did.?
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