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When Ethan Tkalec rode into the Riverside Brookfield High School cafeteria, his eyes lit up — he was in a place where everybody knew his name.
Ethan, 7, has giant axonal neuropathy, a terminal degenerative nerve disorder that affects speech, movement and digestion. Tkalec was diagnosed in 2008.
He rode his wheelchair into Riverside Brookfield High School on Friday for a special “Official Bulldog” celebration. The school had raised $583 for Hannah’s Hope Fund, a New York-based organization that is raising money to find a cure and fund drug therapies for GAN. The Student Association raised the funds through its Valentine Matchmaker fundraiser.
Ethan stayed at RB for three lunch periods, dining on chocolate milk and cheese pizza. There was a crowd of fans around his table, hugging him and giving him high-fives.
Ethan’s mother, Gelse, was overwhelmed by the attention.
“You guys give me goosebumps,” she said to the students. “RB has been so generous to us. I love it.”
Angela Ziola, a psychology teacher and the faculty sponsor of the Student Association, organized the event.
“We wanted to embrace him as part of our family since he lives in our community,” Ziola said. “The students in the Student Association felt they had a responsibility to introduce Ethan to everyone, so that they understood what the money was going to help — sweet little kids like Ethan.”
Gelse said that Ethan is one of 15 children worldwide participating in a GAN study at the University of North Carolina-Chapel Hill. He will participate in cognitive and physical tests four times over two years to determine the progression of GAN and create gene therapy to hopefully find a cure.
There are 45 people worldwide who have the disease.
RB Principal Pam Bylsma said this was the perfect opportunity for students to practice what they preach as part of the RB Character Counts! campaign.
“It was a great opportunity for them to step forward and help a community member and a family that needed our help,” Bylsma said. “We talk about the heart, the head and the hands in character education. Cognitive is how you think about something; affective, how you feel about it; and behavioral, what you do.”
Ethan said he liked all the attention.
“I hugged people, and I made some friends,” Ethan said. “The money they donated is awesome. It’s awesome because the money is going to help me walk.”
When Ethan Tkalec rode into the Riverside Brookfield High School cafeteria, his eyes lit up — he was in a place where everybody knew his name.
Ethan, 7, has giant axonal neuropathy, a terminal degenerative nerve disorder that affects speech, movement and digestion. Tkalec was diagnosed in 2008.
He rode his wheelchair into Riverside Brookfield High School on Friday for a special “Official Bulldog” celebration. The school had raised $583 for Hannah’s Hope Fund, a New York-based organization that is raising money to find a cure and fund drug therapies for GAN. The Student Association raised the funds through its Valentine Matchmaker fundraiser.
Ethan stayed at RB for three lunch periods, dining on chocolate milk and cheese pizza. There was a crowd of fans around his table, hugging him and giving him high-fives.
Ethan’s mother, Gelse, was overwhelmed by the attention.
“You guys give me goosebumps,” she said to the students. “RB has been so generous to us. I love it.”
Angela Ziola, a psychology teacher and the faculty sponsor of the Student Association, organized the event.
“We wanted to embrace him as part of our family since he lives in our community,” Ziola said. “The students in the Student Association felt they had a responsibility to introduce Ethan to everyone, so that they understood what the money was going to help — sweet little kids like Ethan.”
Gelse said that Ethan is one of 15 children worldwide participating in a GAN study at the University of North Carolina-Chapel Hill. He will participate in cognitive and physical tests four times over two years to determine the progression of GAN and create gene therapy to hopefully find a cure.
There are 45 people worldwide who have the disease.
RB Principal Pam Bylsma said this was the perfect opportunity for students to practice what they preach as part of the RB Character Counts! campaign.
“It was a great opportunity for them to step forward and help a community member and a family that needed our help,” Bylsma said. “We talk about the heart, the head and the hands in character education. Cognitive is how you think about something; affective, how you feel about it; and behavioral, what you do.”
Ethan said he liked all the attention.
“I hugged people, and I made some friends,” Ethan said. “The money they donated is awesome. It’s awesome because the money is going to help me walk.”
Ethan was given a bag with a T-shirt, a large stuffed bulldog, magnets and stickers. He had a message for RB students, and got on the cafeteria microphone to share it.
“It’s fun being a bulldog!” Ethan shouted. “Go Bulldogs!”
Students Danielle Ryan and Tyler Radek said they were moved by Ethan and his story.
“We raised money for him, but none of us had ever met him,” Danielle said. “Everyone is coming up to the table; it’s so nice having him here. It made it more personal — to put a face to the name. It was very emotional.”
Tyler works with children with special needs as part of the RB Best Buddies program, and said he was looking forward to meeting Ethan.
“This is what I love to do,” Tyler said. “I really want everyone to feel welcomed, not just in school, but in life. This kid has been to hell and back every day of his life, and here we are, complaining about little things. I’m happy just to see his smile.”
To help
To make a donation to the Hannah’s Hope Fund, an organization working to find a cure for giant axonal neuropathy, visit www.hannahshopefund.org.
