Owen Shaker was just 5 years old when he hit his head on a table while playing at his Oak Park home, a moment his parents thought was nothing more than a bump. Instead, it set off a chain of events that would end with his death six months later from one of the deadliest cancers in children. Now, his mother is turning her grief into a national push for more research funding.
Urgent care doctors initially thought Owen had only bumped his head, according to CBS News Chicago. But an MRI soon revealed the real problem: Owen had diffuse intrinsic pontine glioma, or DIPG, an aggressive brainstem cancer that is almost always fatal. Doctors told Amanda and Adam Shaker that their son had six to nine months to live. Owen exhibited what his family described as bizarre behavior and lost movement on his left side as the disease progressed, the outlet reported.
The diagnosis fits a grim national pattern. DIPG accounts for 75% to 80% of all pediatric brainstem tumors, with an estimated 150 to 300 children diagnosed annually in the United States at a median age of 6 to 7, according to DIPG.org. Surgical removal is generally impossible because the cancer cells diffusely infiltrate the pons, the brainstem structure that controls breathing, heart rate, and swallowing, per St. Jude Children's Research Hospital.
A Six-Month Fight Without Surgery
Standard treatment for DIPG includes 30 rounds of radiation, but for Owen, the radiation did not work and failed to relieve his symptoms as intended, the CBS Chicago report noted. His parents took him on family trips to Michigan, Minnesota, and Wisconsin while he could still travel, and heavy steroids doubled his weight during treatment. Amanda and Adam Shaker chose not to tell Owen what was ahead, according to the station's report.
Owen fought DIPG for five months before he died after receiving a morphine prescription, surrounded by family love at the end of his life, per the same account. His parents had begun homeschooling him for kindergarten during the COVID-19 pandemic, and by all accounts he spent his final months loving ninjas, his sister Sydney, and life itself. The median survival time for DIPG after diagnosis is 9 to 12 months, with fewer than 10% of patients surviving two years and roughly 2% surviving five years, according to the Team Jack Foundation.
Grief Becomes a Block Party
What began as a virtual 5K sponsored by the ChadTough Defeat DIPG Foundation has since grown into an annual block party held outside the Shaker family's Oak Park home, now drawing more than 1,000 people each year. The ChadTough Defeat DIPG Foundation was founded by Tammi and Jason Carr after they lost their 5-year-old son, Chad, to DIPG in 2015, and it has grown into a national nonprofit funding clinical trials and pediatric brain tumor research, according to Patch. By September 2025, the event, known as RunTough for Team Owen, had raised $111,547 for pediatric brain cancer research, per the ChadTough Defeat DIPG Foundation.
The party now features four to five bands each year, with food vendors donating their services, and it has drawn support beyond the family's immediate circle. In September 2021, rival high school soccer teams from Oak Park and River Forest High School and Fenwick High School walked together to the Petrzelka home after a match to take part in the virtual run, an effort organized by Owen's cousin, who played for Fenwick, according to the Wednesday Journal.
Fighting for a Disease Some Call Too Rare to Fund
Amanda Shaker has said she plans to keep raising money for more DIPG research and potential treatment, framing her advocacy in blunt terms: people with smaller-population diseases still matter, and rare diseases should not mean forgotten diseases, she said, per CBS Chicago. Her argument lines up with federal funding data. Historically, only about 4% of total federal cancer research funding from the National Cancer Institute goes to all pediatric cancers combined, according to a report from the American Association for Cancer Research, leaving adult cancers with the remaining 96%.
There are signs that grassroots pressure and scientific persistence are beginning to pay off. In August 2025, the FDA granted accelerated approval to dordaviprone, marketed as Modeyso, for recurrent H3 K27M-mutant diffuse midline glioma, marking the first-ever FDA-approved medication for this type of brain cancer, according to Jazz Pharmaceuticals. The drug works by targeting cancer cell mitochondria and dopamine receptors. The approval reflects a broader shift in how the disease is understood: in 2016, the World Health Organization reclassified brainstem tumors historically known as DIPG into a broader molecular category called diffuse midline glioma, H3 K27M-mutant, moving diagnosis away from tumor location and toward genetic mutation, per NORD.
September is Childhood Cancer Awareness Month, a timing that has not been lost on the Oak Park community that keeps showing up for Owen. CBS Chicago has said it will also report on a researcher whose work could change the course of DIPG treatment and whose connections trace back to Owen and his family, underscoring that the story of one Oak Park boy's short life continues to ripple outward into the labs working to make sure fewer families face the same six-month countdown.
