Some of the first clues for Brandon’s family came when he was just a baby.
Brandon seemed to only use one of his hands – the right.
“He was acting like the left didn’t exist,” said his mother, Anne Kozlowski.
Then there were his reactions to sounds and unexpected noises. And there was his posture and muscle control.
“My dear friend Kathy came over – Brandon could have been 5, 6 months old – and I had him on the floor, and she tried to prop him up, and he just plopped right over,” said Kozlowski.
“She said, ‘Oh Annie, that should not be happening.’ ”
Brandon Steffan, now 6, was eventually diagnosed with cerebral palsy, when he was around 1.
Since then, Brandon has been on what his family calls a long and eventful road.
“It’s been quite a journey with him,” said Kozlowski, who lives with Brandon and his 4-year-old sister Brianna Steffan in Getzville.
This year, Brandon’s story will be highlighted as part of the 2014 Variety Kids Telethon in Western New York, which takes place Sunday at the Adams Mark Hotel in Buffalo and will be broadcast locally on Channel 7 between 7 a.m. and 7 p.m.
The 52nd annual event will feature Brandon as the year’s “celebrity child,” and also will include appearances from well-known Western New Yorkers – former Bills and Sabres among them – as well as a slate of musical performers and other guests, organizers of the telethon said.
“He’s come a long way,” said Liz Kuciel, the 2014 telethon chair, of Brandon.
Kuciel called the 6-year-old boy “a great representative for Buffalo and Western New York.”
The telethon raises money for Variety, the Children’s Charity of Buffalo & Western New York, which was started locally in 1934. Donations collected during the event go to organizations around Western New York, including Women & Children’s Hospital, as well as more than 20 other charities across the region, said Kuciel, a Variety Club volunteer who is also chief barker, or president, of the Buffalo chapter.
“It all goes back into the community,” Kuciel said.
In previous years the event has raised more than $1 million, Kuciel said.
For Brandon, being chosen as the 2014 child was a special moment, his mother said.
Brandon is doing well now, she said. He loves to ride his green bicycle, which is adapted to his needs, and he is a first-grade student at Dodge elementary school in Amherst, Kozlowski said. Brandon has also become more outgoing, and has lots of friends, his mother said.
“He loves everybody and everybody loves him,” Kozlowski said.
But Brandon also has had to overcome plenty of challenges along the way, his mother said.
“None of his development has been typical,” Kozlowski said.
He has ongoing issues with eating, she said. And, until a couple of years ago, he was very sensitive to sounds and noises, she said.
“At birthday parties, the singing was torture for him. He’d have to be taken away,” Kozlowski said.
But through lots of effort Brandon has made good progress, his mother said.
And his attitude couldn’t be better, Kozlowski said.
“He has the spirit of a warrior,” she said. “He’s undaunted.”