Eric Majusiak Takes His First Step, Again

A little over a year ago, Eric Majusiak was near death, suffering from a rare disease with only a 5 percent chance to live.

“His hematologist said Eric was the closest to dying he has ever seen survive in his career,” said his wife Amanda.

This year, you could call him the comeback kid.

He and his wife plan to participate in a 5K walk in New York City on Sunday to raise awareness about hemophagocytic lymphohistiocytosis, HLH. It’s known as an orphan disease; because it is so rare, the disease doesn’t receive much attention or research money.

But the Majusiaks are intimately familiar with the autoimmune disorder. It was so devastating, Eric had to relearn to breathe, eat, speak and walk. They were sweethearts at Highland Regional High School, and now Eric’s illness has drawn them even closer.

“If my story helps just one person, I’ll be one step further along my journey,” Eric said on his website EricsJourney.org.

Liam’s Lighthouse Foundation is sponsoring Sunday’s 5K walk. The organizer and founder, Michelle Schulze, lost her toddler Liam to HLH a few years ago, Amanda said.

“This started with just three people standing outside a New York TV station four years ago and now is going to be about 200,” she said. “We will also be standing outside the Today show on July 22 holding signs and posters to raise awareness for this rare disease and hopefully help save lives and raise more money since it receives no government funding.”