Jack Falejczyk is a pretty typical junior high boy. He plays the violin in his school orchestra and takes piano lessons. He races on a swim team. He loves video games.
Who: Jack Falejczyk, 12
Family: Parents Mark and Beth, sister Erin,
Hometown: Elk Grove Village
In mom’s words:
- It can be exhausting having a child with special needs. You
have to make sure you have something in the tank for the other
- You’ve got to live life in the reality of what it is. That
doesn’t mean that your reality has to be doom and gloom, but it’s
- I think the biggest thing is getting the kids out there, into
some kind of social setting. It does so much for their self-esteem.
They don’t have to win at it, they don’t have to be the star, but
just get them involved.
But Jack Falejczyk also is pretty extraordinary. He learned to play the violin and the piano completely by ear. When he swims, someone taps him on the head so he knows when to turn. And his video games are played on a blank screen, with only sound guiding him.
Jack, 12, has been completely blind since birth. But to him, it’s not an impediment.
“I don’t let my blindness stop me,” Jack says. “You don’t need vision to do pretty much anything.”
Jack has a condition called Leber’s congenital amaurosis, a genetic eye disease. When he was about two months old, his parents, Mark and Beth, noticed he wasn’t reaching the same milestones their daughter, Erin, had. He also developed nystagmus, involuntary eye movement, which doctors tried to correct with glasses. But at six months old, he was officially diagnosed with Leber’s, and the Falejczyks were told “to prepare for a lifetime with a child with visual impairment.”
For Mark and Beth, that meant making sure his life was as “normal” as his sister’s.
“They don’t give you a manual when they diagnose your child as having special needs,” Beth says. “But for me personally … any opportunity that we could have to make him typical is what we were going to do.”
It also means letting Jack try all kinds of things, such as climbing a 30-foot rock wall or driving a speedboat.
“I firmly believe that Jack’s only limitation is what the people around him can’t envision,” Beth says. “If we just let him do anything, he’s going to do everything he can to do it and succeed at it.”
That’s not to say that his parents never get nervous letting him try new things. But Beth says what worries her most is Jack’s acceptance by his peers. So when he recently switched to a private swim club, the Faleczyks blacked out a pair of swimming goggles so his teammates could experience what the pool is like for Jack.
“Now they kind of look at him and go, ‘Wow, it’s amazing what you can do,'” Beth says. “It was really so that we could tear down those walls that were preventing …acceptance.”
He’s become a bit of a celebrity on his local swim circuit; even opponents rush to congratulate him after doing well in a race.
“Jack blows us all away,” Mark says.
In recent years, doctors at the Scheie Eye Institute in Philadelphia have cured some forms of Leber’s and are making strides with others. And although Jack says he’s “looking forward to being given the gift of sight” so he can do new things, it seems somewhat unnecessary. After all, Jack Falejczyk is a kid who does things on a daily basis that most sighted people won’t ever attempt.
“I found out that I do not need vision to succeed,” Jack says. “I only need a goal and the ability to not let my … visual impairment stop me from doing those things.”