‘It’s the worst thing to watch’, mother who lost son to DIPG says

Essexville mother who lost son to brain cancer uses Mother’s Day to highlight deadly disease
Published: May. 14, 2023 at 7:27 PM EDT
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ESSEXVILLE, Mich. (WNEM) - An Essexville mother is using Mother’s Day as a way to highlight a deadly disease, in hopes of sparing others the grief of losing a child.

“It’s the worst thing to watch,” said Donnie Smigiel, whose son Ryan, died from diffuse intrinsic pontine glioma - or DIPG - in 2018 at the age of 24.

According to the Dana-Farber Cancer Institute, DIPG is an aggressive tumor that’s difficult, if not impossible, to treat because it occurs in the brainstem.

“I just want people to know what it is, “Smigiel said. “Look it up. It is terminal upon diagnosis. And most kids live less than a year after diagnosis.”

The incurable and rare form of brain cancer mostly affects children between the ages of 5 and 9.

“Ryan was really fortunate,” Smigiel said. “He was one of the outliers, but nobody survives. It is a death sentence.”

DIPG is the same condition that took the life of the grandson of former University of Michigan Football Coach Lloyd Carr.

Chad Carr was 5-years-old when he died in 2015, and his death launched the Chadtough Foundation.

More funding is needed to help find a cure, and it’s a mission Smigiel said she will continue to fight for.

“If by the end of my life, I have saved one family from this pain, it will all be worth it,” she said.

May is Brain Cancer Awareness Month.

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