Elk Grove Village boy won't let blindness stand in his way

When Jack Falejczyk picked up a violin for the first time two summers ago, he blended into the mass of 70 clueless beginners there for music camp.

All the other incoming fifth-graders could at least glance at their neighbor to make sure they positioned their fingers precisely, held the bow upright or even rested the instrument on the correct shoulder.

Jack could never take those simple luxuries for granted. That's because many, including the teacher, didn't know he was blind.

“I didn't realize at first Jack was blind until I saw the cane, and my heart broke for him,” said Janine Bohlman, who teaches Elk Grove Township Elementary District 59's summer orchestra program. “I can't imagine not having the attention I would need to succeed in that situation.”

Together Jack, his peers and his mentors adapted and kept going when they stumbled, and the Elk Grove Village boy now plays sonatinas with the best of them as a member of the Grove Junior High orchestra.

It's just one more talent that makes Jack an accomplished 12-year-old by any standard. Aside from the violin, Jack is a gifted pianist, competitive swimmer and recent youth chairman for a major fundraiser.

“My personal mission statement is to not let my blindness hold me back,” Jack said. “If you try something, it takes time, but it comes.”

Parents Beth and Mark Falejczyk first knew something was wrong when Jack was about 3 months old.

“We noticed he wasn't progressing like (older sister) Erin had,” Beth Falejczyk said. “He wasn't tracking things. He didn't have any visual curiosity. And there was some rolling of the eyes.”

Once Jack hit the required six-month mark to undergo testing, doctors delivered the devastating news: Jack suffered from Leber's congenital amaurosis, a rare genetic disorder that affects the retina. What's more, Jack's version of the disorder causes total blindness, so he lacks even minimal light perception. And nobody offered the slightest hope of there ever being a cure.

Life subsequently became a series of adaptations, and with that came the realization that Jack could at least try just about anything.

The family first decided to explore Jack's uncanny ability to re-create music. As a toddler, he figured out “Twinkle Twinkle Little Star” on a toy keyboard and once started playing Bette Midler's “The Rose” after hearing the song during a trip to his grandma's.

“Everybody says this about blind kids, but Jack really does have perfect pitch,” Jack's mom said. “He can hear a song and just play it.”

Piano teachers who boasted experience working with visually impaired students weren't easy to come by, so Jack started getting lessons from a park district music camp instructor. He didn't learn to read Braille music as many other blind musicians do. Instead, he listens in parts — sometimes the music can be separated by the right and left hands — and then slowly assembles a piece through trial and error.

“I really enjoy it,” Jack said. “Maybe I'll get a drum set next.”

Never one to stand on the sidelines for long, Jack followed in his older sister's footsteps and started swim lessons. Now he's on one of the Hickory Willow Swim Association's competitive teams. Breast stroke is his favorite because it relaxes him.

To prevent Jack from running into the wall and injuring himself, someone holds a pole with a dangling tennis ball that's been dubbed the “bonking stick.” Jack gets a tap on the head when he gets close. And to get a sense of what Jack experiences in the pool, his teammates and coaches briefly wore blacked-out goggles.

“They were scared. It was an unfamiliar experience for them, but that's what I do every day,” Jack said. “For me, it's not such a big deal.”

Jack excels in the classroom as well, bringing home straight A's and earning his sixth-grade class's President's Award for Academic Excellence. He sometimes works with an aide and resource teacher but otherwise goes through the school day with his peers.

He used to read Braille books but now uses a device called BrailleNote for homework, reading, the Internet and just about everything else.

Jack's academic success led to a past invitation to the National Braille Challenge, a Los Angeles-based competition that judges the most high-performing blind students in the U.S. on skills such as spelling, proofreading, reading comprehension, and charts and graphs. He took fourth place four years ago and hopes to return soon.

Until then, you can probably catch Jack rock climbing, performing stand-up comedy at Lions Camp, volunteering as the school basketball team's stats manager or working toward his dream career as an audio game programmer.

Hopefully, he'll face a difficult decision down the road.

Retinal degenerative diseases are getting more attention than ever before, and a cure may lie ahead. VisionWalk, a nonprofit that fights blindness and named Jack its youth chairman, drew 1,200 walkers to Busse Woods last month and raised a record $320,000 for the Foundation Fighting Blindness.

“There are so many doctors doing research, from pill form to injections to mechanical robotic elements on a pair of glasses,” Beth Falejczyk said. “There aren't a lot of clinical trials for his specific gene, but you never know which is going to be the right one.”

Jack used to resist trips to see researchers who'd want to learn more about his condition. He'd tell his parents that nothing was wrong with him; couldn't his sister be blind so that she could compete in Braille contests, too? But Jack has had a change of heart and now thinks he'd welcome any sort of treatment that might lift the darkness.

“I'd want it,” Jack said. “It'd be exciting to see something, even if it's just a car coming so I'd know to get out of the way.”

Ÿ Kimberly Pohl wrote today's column. She and Elena Ferrarin always are looking for Suburban Standouts to profile. If you know of someone whose story just wows you, please send a note including name, town, email and phone contacts for you and the nominee to standouts@dailyherald.com or call our Standouts hotline at (847) 608-2733.

Jack Falejczyk

<b>Age</b>: 12

<b>Hometown</b>:Elk Grove Village

<b>School</b>: Grove Junior High School

<b>Who inspires you?</b> My swim coach, Chris Flamion, inspires me in swimming. He shows me the correct swimming technique and challenges me to swim better.

<b>What's on your iPod?</b> My iPod has a few game apps and a lot of old-time radio shows. I love the old Superman radio program. The radio shows are very descriptive and good stories. My favorite game apps are “Smack Me,” “Audio Invaders” and “Slap It.”

<b>What book are you reading?</b> I am reading “Gregor the Overlander” by Suzanne Collins.

<b>The three words that best describe you?</b> Blind, Ambitious, Courageous