The eight-year-old boy coming toward us in a Variety Village hallway, with the toothy grin and leg braces, does not look like a fierce warrior for justice.
I mean, he can’t even speak.
Don’t be fooled.
True, Franek Krystyniak is a charmer, as you can clearly see in his photo. But, in his way, he’s also our leaders’ worst nightmare:
A cute kid with a disability and a cause staring accusingly at them from a front page or a TV screen. It works wonders.
Franek and his family campaigned on Global TV against a ridiculous immigration law that effectively barred kids like him.
Lo and behold, that law is no more.
Franek’s family advocated for inclusion with “regular” kids in a “regular” classroom at a “regular” school, instead of segregation.
Lo and behold, Franek is in standard Grade 3, with extra help.
Doctors said he’d be lucky to walk, let alone skate, swim or ride a bicycle.
Lo and behold, he does all four, though it is not easy. He has the knee bruises to prove it.
“Franek never gives up,” says his mom, Karolina, 37, a finance prof at Ontario Tech University in Oshawa. “It takes him so long to learn something, but he’s very persistent.”
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Franek has Angelman syndrome. His brain’s software is awry. It’s a genetic glitch that causes physical and cognitive delays.
Angelman kids have bad balance, can barely sleep and many suffer seizures, though Franek has had just one that required an ambulance.
Believe it or not, the syndrome was a potential excuse to help boot Franek’s family from Canada.
They migrated from Poland, via New York City, where his mom got her PhD and was offered the Ontario Tech job in 2016. His dad, Jakub, is an art director. His brother, Henio, is three years old and charging unfettered through a typical childhood.
The Krystyniaks would seem a big net-plus for Canada.
But the feds saw Franek as a burden — until he and kids like him went on TV.
The law changed in 2019 and the Krystyniaks are enroute to Canadian citizenship.
Welcome aboard, Franek.
Which brings us to the Variety Village pool. Franek, like many young Villagers, works with Paediatric Physiotherapy Associates.
One day a week, he learns to cycle or otherwise move through the world.
“What takes my 3-year-old two minutes to learn, like ride a scooter, takes Franek two years,” says his mom.
A second day, highlight of his week, he swims.
Kids with Angelman syndrome love water. They love the sensation and the support of weakened limbs. Swimming bolsters his core, and keeps any wheelchair at bay.
Also, says his mom, “it furthers his inclusion.
“He can go in the pool with other kids. Same with skating and cycling. So, the other kids know he’s not some sort of alien.”
Actually, Franek loves a lot of things, once you get to know him. Things that make him smile, quickly and easily.
Technology, for instance. He’s a bee to honey with Sun man Jack Boland’s cameras. His parents keep their home office locked.
“Oh, all those lovely laptops,” says his mom, laughing.
Franek has a “talker,” a communication pad. On its keys, he tells me he loves popcorn and movies, the current favourite being Sing 2.
“Curious,” he types, then pounces on my digital recorder. He hits the “curious” key on that “talker” — which his mom programmed herself — as much as any other.
Clearly, there’s much more going on inside Franek than meets the eye.
“He understands a lot,” says Karolina. “People make assumptions. Even experts. They assume he’s not going to learn. That’s the biggest part of our advocacy at school, for people to see him as a student, as capable of learning. It just takes him a long time.”
Oh, and he loves Variety Village. Here, everybody knows his name.
“Most places, having a child with disability can be very lonely,” says Karolina. “You stick out, like you’re misfits.
“Here, there’s no B.S. There’s no judgment.
“We do physio, we do swimming, we do camps, all these things.
JOIN FRANEK’S QUEST
The kids of Variety can champion themselves, but they still need our help.
One way is via the Sun Christmas Fund for Variety Village. We’ve raised $1.7 million over the decades.
You can donate directly at sunchristmasfund.ca. Watch for promo ads in the Toronto Sun through New Year’s.
The fund supports that iconic Scarborough sport complex geared to children with disabilities.
The following kind souls understand its worth. Our latest donors:
Helen Zarkos, Toronto, $30
Jeannette Warren, Scarborough, $200
Sharon van Son, Toronto, $200
Valence Young, Toronto, $50
Sergio Iaboni, Richmond Hill, $100
Harjeet Sandhu, Ajax, $250
Vaughan Grater, Toronto, $50
Dwight Powell, Aurora, $500
Iffat Ladha, Toronto, $50
Michael Kyte, Richmond Hill, $50
Linda McKay, Toronto, $250
Grace Bruce, Toronto, $50
Mike Bailey, Caledon East, $150
Gloria Riddall, Mississauga, $100
Mark Baker, Toronto, $100
John & Sandi Dollin, Collingwood, $50
Audrey Duff, Toronto, $180
Susan McCoy, Toronto, $100
Susan Seabrooke, Scarborough, $50
Andrew Barber, Mississauga, $30
Mike Grey, Toronto, $50
James Roberts, Toronto, $100
Kaleigh Burns, Toronto, $50
Renate Gittens, Mississauga, $100
Carol Bolton, Etobicoke, $150
Toby Hogeveen, Brantford, $150
Patricia Galata, Mississauga, $100
Barbara Brunsden, Toronto, $100
Lynne Matthews, Toronto, $50
Gloria Aitken, Burlington, $50
Mary Lou Hiegel, Toronto, $100
Adele Matthews, Scarborough, $25
Dragana Sivac, Toronto, $50
Linda Steinberg, Amherstview, $25
Helen Bedkowski, Toronto, $25, in memory of Karen Ford
Steve Rynard, Toronto, $50
Jimmy Burnsy, Toronto, $50
Orest Procyk, Etobicoke, $100
June Hodge, Lisle, $250
Dorrit Anne de Demeter, Toronto, $500
Yvonne Rice, Toronto, $125
Ruth Ransom, Mississauga, $100
Frances Carson, Oshawa, $100
Carl Anderson, North York, $50
Barry Roden, Toronto, $100, to honour Gail Roden
Martina Konda, Mississauga, $100
Tom & Nina Tashos, Etobicoke, $500, in memory of our son Danny
Bruce & Yvonne Murray, Brampton, $100
Tim Manning, Burlington, $500
John L. Rice, Toronto, $500
Mary Mark, Scarborough, $100
Elaine Benzing, Toronto, $300
Agatha & Vince Lisi, Etobicoke, $25
John Hutton, Cobourg, $20
Dieter & Carol Freier, Willowdale, $25
Linda Kahler-Carscadden, Scarborough, $50
Elizabeth Creighton, Toronto, $200
TOTAL TO DATE: $21,545