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, stuffed with power.

“He was very rambunctious, he was very sort a little bit of an outdated soul,” mentioned Owen’s mom, Amanda Shaker.

“Each evening, it might be constructing forts in his room or wrestling me on the lounge ground earlier than bedtime,” added Owen’s father, Adam Petrzelka.

Then, in, April of 2020, his mother and father observed he started performing in another way.

“He began exhibiting peculiar habits the place he was working into the wall, he had a tough time going up the steps,” Amanda mentioned.

Owen’s mother and father thought the peculiar habits was as a consequence of navigating distant studying since COVID had simply began, however, the 5-year-old’s situation grew to become worse.

After a visit to Lurie Youngsters’s Hospital, Owen was recognized with a uncommon type of pediatric mind most cancers known as DIPG. The survival charge is 0%.

“It is a dying sentence and that’s the hardest factor as a guardian, you need and hope to do one of the best to your baby and there may be nothing you are able to do,”

“It is actually arduous to just accept you’re going to lose him and you must make one of the best of the time you’ve gotten,” Amanda mentioned.

Owen died 5 and half months after being recognized. His mother and father donated his mind tissue for analysis.

“On the time of dying, we’ve one of the best alternative to gather probably the most tissue and quite a lot of tissue,” mentioned Melissa Williams, a Present from Little one Program tissue navigator.

Researchers mentioned autopsy tissue is one of the best hope for arising with therapies for pediatric mind cancers. Up to now 60 years, there was little progress as a result of so little cash is dedicated to kids’s most cancers medicine.

“We now have loads of totally different sorts of mind tumors the place long-term survival is lower than 20%, some are zero %,” mentioned Dr. Angela Waander, with Lurie Youngsters’s Hospital.

By means of a corporation known as the “Swifty Basis,” Lurie Youngsters’s Hospital is one in all 4 facilities in the US that arranges for the troublesome logistics of mind tissue donation. The tissue is shared with a consortium devoted to pediatric mind most cancers analysis.

“Up to now 10 years, we’re making grounds. We’re gaining access to tissue and we’re sharing nationally and internationally,” Dr. Waanders mentioned.

Owen’s mother and father strongly encourage different mother and father who lose their kids to mind most cancers to donate their kid’s tissue.

“You are in search of power in numbers to attempt to discover a remedy for all these children going by way of the identical factor,” Adam mentioned.

With extra mother and father making the emotional choice to donate their kid’s autopsy tissue, medical doctors are hopeful throughout the subsequent 10 to twenty years, analysis will result in pediatric mind most cancers therapies that can save kids’s lives.