DIPG graphic

He was the victim of an aggressive and always deadly brain tumor.

Ryan Smigiel had what’s known as Diffuse Intrinsic Pontine Glioma (DIPG), which most often affects children.

May 17 is DIPG Awareness Day and one family is opening up about this disease.

“They call it an orphan disease because it doesn’t kill enough people, but in our world it does,” said Donna Smigiel, Ryan’s mother.

Ever since Ryan died from a brain tumor last year, Donna has been on a mission to spread the word about the deadly disease that took his life called DIPG.

The disease is essentially a death sentence with less than 1% survival rate for more than five years after diagnosis.

The brain tumor is one that normally occurs in small children such as Chad Carr, the grandson of Michigan football coach Lloyd Carr, as well as other kids like Braden Miller, Kaleb Stuck, and Ian Pomeroy, all of whom were from Mid-Michigan.

However, Ryan was already at the age of 21 when he was diagnosed.

But despite the odds, his mother said he never once let it bring him down.

“Didn’t complain during his fight, took it like a champion. Went to schools and talked to kids about disabilities once he was paralyzed and was just a standup guy,” Donna said.

In honor of DIPG Awareness Day, Ryan’s family is now advocating for more research to be done into finding a cure.

“Nobody should have to go through that, especially when the treatment hasn’t advanced in 30 years,” said Eddie Switek, Ryan’s brother in law.

Eddie, like most of the family, is still coping with the loss but said on this special day, along with so many others, they’re continuing to spread the word about this disease and its impact in order to one day come.

“Ryan was extremely fortunate, they originally gave him six days to live and he lasted about three years,” Eddie said.

“We got to think that Leukemia was once an orphan disease and look how it’s curable now. So there is hope,” Donna said.

Copyright 2019 WNEM (Meredith Corporation). All rights reserved.

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