Press
Fourteen-year-old Riverside resident Ethan Tkalec is doing pretty well a week after major back surgery.
Ethan, a Riverside-Brookfield high school freshman who suffers from a rare and incurable disease called giant axonal neuropathy (GAN) had spinal fusion surgery last week at Lurie Children’s Hospital in Chicago to strengthen his back and prevent his spine from collapsing on his organs.
Having The Time Of His Life
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.
High School Goes ‘All In’ To Surprise Student With Rare Genetic Disorder
The school hosted a special breakfast from Blueberry Hill café. Classmates designed special T-shirts for Friday’s surprise. They also wrote hundreds of letters wishing him well.
Today we celebrate Ethan Tkalec
Throughout his life, Ethan has received care at Lurie Children’s as he has undergone several surgeries and recovered in the Lefkofsky Family Pediatric Intensive Care Unit.
May-k My Day: A surprise for Riverside teen Ethan Tkalec
Chicago area teen Ethan Tkalec has Giant Axonal Neuropathy (GAN), a very rare and terminal disease that affects only around 70 people worldwide.
Ethan’s parents want to shine a light on this disease and we surprise Ethan with a visit from the Chicago Blackhawks’ mascot Tommy Hawk. Ethan also gets a surprise from Blackhawks’ star player Patrick Kane.
Ethan Tkalec: Man of the hour 24 hours a day
Ethan was an “honorary RB bulldog” for the day. Ethan has Giant Axonal Neuropathy (GAN), a rare, autosomal recessive neurological disorder that causes disorganization of neurofilaments. While he has this rare disease that effects his body, it does not hinder his unusually positive spirit.
Is spirit week spirit weak?
Spirit week is an annual event at Riverside Brookfield High School where each day, students dress up according to different themes. This occasion is used to encourage school spirit, as well as promote the Homecoming football game and dance.
RB goes All in for Ethan
On May 1, Ethan Tkalec will undergo a challenging medical procedure. Ethan has Giant Axonal Neuropathy (GAN), a condition that affects less than 50 families in the world. This procedure will last at least eight hours. This week, Riverside Brookfield created multiple opportunities for the community to show their support for Ethan and his family.
All in for Ethan Fundraiser Raises $35,000 for GANs Research
Saturday, February 24, 2018, marked the fifth annual All in for Ethan fundraiser. The fundraiser benefitted GANs research, a rare disease that affects one of RB’s students, Ethan Tkalec.
In speaking with Ethan, he acknowledged that this venue, Gibson Bar and Steakhouse, was his favorite place to host the event.
The event had a great turnout of people from different parts of Ethan’s life. Friends, family, teachers, doctors, and more attended the fundraiser.
All In For Ethan to raise funds for GAN research
All In For Ethan is a fundraiser being held on Saturday, February 24, at Gibson Bar & Steakhouse. This is the fifth annual event, and the proceeds go towards a fund for Ethan Tkalec and others with Giant Axonal Neuropathy.
“Ethan’s parents wanted to build something to help out other people [with GAN]. There’s not a lot of funding for this or a lot of awareness for it so they just wanted to help raise awareness and help somehow,” said Jake Garvey, a close friend of Ethan’s.
Ethan’s World
Before I came to RB, I went to Hauser. Hauser was a very different school from RB for me. While I did like Hauser, there were still things that were tough for me when I was there. The classes and work I had to do everyday was sometimes difficult. I had a lot of great friends and teachers and I participated in a lot of activities that Hauser provided. The activities that I did after school were the best part of being at Hauser. We took a field trip to the Brookfield Zoo. With the Cougar Buddies, I went to Springfield to see the Abraham Lincoln Museum, we planned parties and made a commercial to promote the group. I was also in two play productions: Beauty and the Beast and Sherlock Holmes. All of these activities made my middle school experience enjoyable.
