Usually, Ethan Tkalec is driven to school in the family van. But April 27 was different.
Instead of the family van, a Riverside-Brookfield High School minibus filled with Ethan’s closest friends arrived at his Riverside home a little before 8 a.m. to take him to school, escorted by a Riverside police car.
That was the beginning of a special day for Ethan, a 14-year-old RBHS freshman who suffers from giant axonal neuropathy, known as GAN, an extremely rare inherited genetic disorder that progressively attacks the body’s central nervous system and weakens the muscles. Those with GAN typically don’t live beyond their early 20s.
“This disease is very similar to ALS and it’s just a devastating disease,” said Ethan’s mother, Gelse Tkalec.
Friday was Ethan Tkalec’s last day of school at Riverside-Brookfield High School this year and students and staff wanted to make it unforgettable. On May 1, after the Landmark’s press time, the Ethan was scheduled to undergo major spinal surgery to help him deal with the effects of GAN.
During the risky surgery at Lurie Children’s Hospital, surgeons will implant two titanium rods in Ethan’s back during a spinal fusion operation to control severe scoliosis.
“This will help the spine stay straight despite his weakness in his muscles and it will help to have the back not collapse back on the organs,” Gelse Tkalec said. “It will help keep the lungs clear longer. It was very difficult for us to decide to do this because there is risk of doing the operation, but there is also a greater risk not to do anything.”
On Friday at RBHS the focus was on Ethan and showing him how much he meant to the school.
When Ethan entered the school Friday morning, he was met by two rows of students lined up to clap him into the building. Then came a special breakfast. At lunch, Ethan was feted in the cafeteria.
He was given a signed photograph of Chicago Blackhawks star Patrick Kane and presented with a RBHS football jersey bearing the number 1. The Tkalec family was also given $2,300 that students and staff raised to help defray costs associated with his surgery. Students presented Ethan about 200 handwritten cards at the end of the day.
The lunch period culminated when Ethan zoomed his motorized wheelchair down the aisle in the middle of the cafeteria to the cheers of fellow students while one of his favorite songs, “Thunderstruck” by AC/DC, blared through the speaker system.
At the end of the day Ethan led the RBHS band through the school’s hallways and out the door as the band serenaded him with music.
“It was very cool,” Ethan said, adding that the lunchtime celebration was loud and crazy and made him feel warm inside.
Ethan positivity and joyfulness has profoundly affected those who know him best.
“He’s taught me that nothing really lasts forever and to enjoy the moment while it’s here and definitely not to sweat the little things,” said Annalisa Cinkay, who met Ethan in a sixth-grade art class at L.J. Hauser Junior High School and is perhaps his closest friend.
Cinkay says that Ethan is a great friend. They talk on the phone, sometimes they sing together or just hang out.
“It’s the best relationship I have in my life,” Cinkay said. “He has taught me so many things about love and loving myself and loving others and appreciating everyone in my life.”
Ethan is a sweet, funny, sarcastic boy who maintains a positive, upbeat attitude despite being confined to a wheelchair and dealing with the limitations of a devastating disease for which there is currently no cure. He loves happy movies, classic rock groups such as Led Zeppelin, Queen, Journey and Van Halen.
Friday RBHS science teacher Dave Monti gave Ethan a special gift: a guitar pick that once belonged to Angus Young, the lead guitarist and co-founder of AC/DC.
Ethan loves dance parties and singing.
“He’s always down to party and dance and he’s also really sarcastic,” said Audrey Connelly, a RBHS sophomore who is Cinkay’s stepsister and also one of Ethan’s best friends. “He’s always lifts my spirits whenever I’m with him and he honestly just radiates love and positivity.”
Ethan is popular with girls and is known as something of a flirt.
“He’s one of the biggest flirts I think I’ve ever met, and every girl just plays into it, and honestly it’s just his positive attitude that attracts the girls so much,” said Angie Kuehn a nurse and Ethan’s aide at RBHS.
This year, however, Ethan has formed an exceptionally close relationship with Brookfield resident Jake Garvey, who is his Best Buddy in a club that pairs students with special needs with students in the general RBHS population. Garvey is co-president of Best Buddies.
“Something just clicked,” said Garvey, a senior standout baseball player who is going to play baseball at Concordia University next year. “We just get along really well.”
Although Ethan has a feeding tube, he can eat some regular food. He loves macaroni and cheese. He and Garvey like to go out to eat at Irish Times in Brookfield and Nicksons in LaGrange. Both families have become close due to the relationship between the two boys.
Like Ethan’s other friends, Garvey says that time spent with Ethan always brightens his day. They might watch a Blackhawks game together or just hang out. During his adaptive physical education class, where Garvey serves as an aide, Ethan likes to race Garvey using his motorized wheelchair while Garvey runs.
“He’s showed me how to just have fun with everything,” said Garvey, who said Ethan is like his third brother. “I’ve never had a bad day hanging out with him. He’s just fun to be around.”
On Friday night, Ethan was back at RBHS to see the Orchesis dance show that included senior McKenna Doyle, another close friend and Best Buddies Club member who is Garvey’s girlfriend.
Ethan had an unusual class schedule, structured to appeal to his interests and limitations. In addition to an English class he took with other special-needs students and adaptive physical education, he took three classes with the general RBHS student population: Choir, Acting and Directing and Drawing and Painting.
Ethan’s parents, John and Gelse, were moved by the outpouring of love for Ethan at RBHS.
“We just think it’s incredible that the school has come together to do this for Ethan,” Gelse Tkalec said.