Parents encourage brain tissue donation after young son dies from rare pediatric brain cancer

CHICAGO (WLS) -- Owen Petrzelka was a typical 5-year-old boy, full of energy.

"He was very rambunctious, he was very kind a bit of an old soul," said Owen's mother, Amanda Shaker.

"Every night, it would be building forts in his room or wrestling me on the living room floor before bedtime," added Owen's father, Adam Petrzelka.

Then, in, April of 2020, his parents noticed he began acting differently.

"He started exhibiting peculiar behavior where he was running into the wall, he had a hard time going up the stairs," Amanda said.

Owen's parents thought the peculiar behavior was due to navigating remote learning since COVID had just started, but, the 5-year-old's condition became worse.

After a trip to Lurie Children's Hospital, Owen was diagnosed with a rare form of pediatric brain cancer called DIPG. The survival rate is 0%.

"It's a death sentence and that is the hardest thing as a parent, you want and hope to do the best for your child and there is nothing you can do,"

"It's really hard to accept you are going to lose him and you have to make the best of the time you have," Amanda said.

Owen died 5 and half months after being diagnosed. His parents donated his brain tissue for research.

"At the time of death, we have the best opportunity to collect the most tissue and a variety of tissue," said Melissa Williams, a Gift from Child Program tissue navigator.

Researchers said post-mortem tissue is the best hope for coming up with treatments for pediatric brain cancers. In the past 60 years, there has been little progress because so little money is devoted to children's cancer drugs.

"We have a lot of different kinds of brain tumors where long-term survival is less than 20%, some are zero percent," said Dr. Angela Waander, with Lurie Children's Hospital.

Through an organization called the "Swifty Foundation," Lurie Children's Hospital is one of four centers in the United States that arranges for the difficult logistics of brain tissue donation. The tissue is shared with a consortium dedicated to pediatric brain cancer research.

"In the past 10 years, we are making grounds. We are getting access to tissue and we are sharing nationally and internationally," Dr. Waanders said.

Owen's parents strongly encourage other parents who lose their children to brain cancer to donate their child's tissue.

"You're looking for strength in numbers to try to find a cure for all these kids going through the same thing," Adam said.

With more parents making the emotional decision to donate their child's post-mortem tissue, doctors are hopeful during the next 10 to 20 years, research will lead to pediatric brain cancer treatments that will save children's lives.