How Eddie Ilarraza Defies the Odds & Conquers Life Despite Having ALS for Nearly Two Decades

Tags: Currents ALS, Brooklyn, NY, Crux, Faith, Family, Inspiration, Media, Queens, NY, World News

By Michelle Powers

In the year 2000, Eddie Ilarraza was taking over New York City, one battle at a time. 

He began breakdancing in high school and was known as the playboy of John Dewey’s class of ’88. He lived up to expectations, while breaking them down. 

By night he would dance, and by day he was a drug counselor – sometimes casually using some himself. 

He moved through life at high speed. Until one day, time froze.

“It was like he was drunk,” said Eddie’s friend, Judith Natt.

Fast forward to 2002 and this breakdancer could barely lift a finger. 

Now, instead of music – the sound of medical machines fills his days. 

You can hear Eddie breathe, but not his voice – just the sound of his speech generating device.

“Clubs, bars, I was [the] second best break dancer, that’s how good I was,” Eddie said.

Eddie didn’t forget his moves, he just never danced again. In 2002, he was diagnosed with ALS, a rare disease that causes the loss of muscle control. 

He’s paralyzed from the neck down, but he’s able to move his eyes and type with them, pointing his pupil towards specific letters on a keyboard. 

“I thought about dying all the time,” he said. “It was torture.”

Doctors expected Eddie wouldn’t be here right now. The average life expectancy is only five years, but Judith says everyday Eddie chooses life and that’s what keeps him alive. 

“I want to be with him to reach his potential,” she said. 

There’s a list of things Eddie can’t do–– ones Judi helps him with–– but there’s a longer list of things he can do that most Americans never will. He’s written four books and writes poetry. He composes music. He just completed his masters in social work, and he’s just classes away from finishing his MBA. He even just finished applying for his doctorate at U.S.C.

“Nothing is impossible when you believe,” he said. 

Eddie wasn’t always this positive. He used to think of suicide, constantly. Yet the more his disease progresses, the more his faith increases.

Through God, Eddie realized ALS could be a chance to make a difference in the world –  and he has. 

Eddie has saved others contemplating suicide by texting them off the edge and countless people have been inspired just by meeting him. His nurse, Pascal, calls him the messenger.

“No matter what the situation [is] you can do better,” he said. 

For Eddie it’s about getting stronger. He’s frozen, but for a higher purpose: for you to realize your own potential.

“If I can do it, then why can’t you?” Eddie asks.. 

Editor’s Note: All four of Eddie’s books are available online and can be found by searching for his full name- Eliseo Ilarraza- on Amazon.