Editor’s note: This story has been updated to more clearly reflect Amanda Shaker’s view of government funding of cancer research.
Family, friends and neighbors will gather Oct. 1 to celebrate the short life of Owen Kemper Shaker Petrzelka and to remember his inspiring mantra. “Tell them I’m happy.”
Owen died Oct. 6, 2020 at the age of 6 after a six-month battle with diffuse intrinsic pontine glioma (DIPG), a rare and incurable brain tumor.
The third annual event combines a virtual 5K and a block party on the 900 block of North Grove where he grew up and his family still lives.
Owen’s 5K is a part of the ChadTough Defeat DIPG Foundation RunTough 5K. The event is organized to support the foundation’s effort to fund research of effective treatments for DIPG and defeat childhood brain tumors.
Petrzelka’s family organizes the annual 5K in his memory to benefit the foundation. Participants can complete the 5K whenever and however they wish, said Amanda Shaker, mother of Petrzelka.
“I have a girlfriend in Italy running it. I have friends in Hawaii who are kayaking. I have a friend in Boston who does paddleboarding,” Shaker said. “So it’s incredibly flexible.”
Those interested in participating can register at www.teamowen.org. Those who wish to donate can do so there, too. Over 400 runners have signed up for the 5K, according to a Sept. 15 news release.
The 5K does not need to be completed on Oct. 1., Shaker said. She will complete the 5K a week before by walking. Her husband and daughter will run it and her youngest son will “drive us crazy,” Shaker said.
Shaker said it’s unfair that out of the 4% of government funding that goes toward pediatric cancer research, brain tumor research receives an ever smaller portion within it.
DIPG affects an estimated 200 to 400 children each year in the U.S. and Europe, and accounts for roughly 10-15% of brain tumors in children, according to the release.
“Parents should not have to bury their child, and then advocate for funds or awareness,” Shaker said.
Three years after her son’s passing, Shaker said she’s a completely different person.
“It is very hard to establish your family as a family of five and try to now live as a family of four,” she said.
She said that when she is having a hard day, she tries to remember what Owen always used to say: “Tell them I’m happy.” She even has it tattooed on her arm.
“When [Owen’s] oncologist would call, I would say, ‘She wants to know how you’re feeling,’ and he would say, ‘tell them I’m happy,’” Shaker said.
“His doctor would ask about his stomach, and if his head hurts. ‘Can you raise your arm?’ the doctor would ask. ‘Is it difficult to swallow?’” Shaker said Owen’s response would be ‘tell them I’m happy.’
“I try to remind myself that he was faced with the worst possible disease. And he was able to find great joy,” Shaker said.
Julie Spyrison, the mother of Owen Petrzelka’s best friend Ronan, has played a part in planning the block party and promoting the 5K on social media. She said in addition to reaching out to local schools for their involvement, she sets up a table at the Oak Park Farmers Market every Saturday to raise awareness and increase donations.
Although Owen Petrzelka is no longer living, Spyrison said her son remembers the spirit of Owen and their family continues to call him their guardian angel.
“My goal in life is for us to never forget him,” Spyrison said. “We want to maintain [Owen’s] memory and make sure that kids in the future don’t experience this, and that we find treatment that prolongs their lives.”
Quite a block party
The block party on North Grove includes crafts such as face painting; carnival games such as pop a shot and a dunk tank; and activities such as mural art, a photo station and sidewalk chalk. The party runs from 10 a.m. to 4 p.m.
Four bands will perform throughout the day. DJ Duke Supreme will perform from 11 a.m. to 1 p.m.; The Island of Misfit Toys will play from 1 p.m. to 3 p.m.; The Hoyle Brothers will take the stage from 3 p.m. to 4:30 p.m.; and The Mann Fam Band will perform from 4:30 p.m. to 6 p.m.
All elementary schools in the Oak Park area will compete to raise the most money for DIPG research, according to the release. The winning school will receive the Ninja Trophy in Owen’s honor.