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Utah family raises awareness as 4-year-old battles rare cancer

Posted at 5:00 PM, Sep 20, 2020

SALT LAKE CITY — A Utah family with a child battling a rare form of cancer is bringing awareness to this terminal disease that has no cure.

In June, 4-year-old Aspen Agnew was diagnosed with diffuse intrinsic pontine glioma (DIPG) after her parents noticed changes in her behavior and she had difficulty walking.

“We took her to the MRI later that day and that’s when they found the tumor,” said Allison Agnew, Aspen’s mother. “It was devastating to say the least. I don’t even know how to explain the way we felt.”

The prognosis that comes with DIPG is heartbreaking.

“He [the doctor] kind of said to us, ‘she had about one to two years,’” Allison said.

According to the Defeat DIPG Foundation, only 10 percent of children live for two years following their diagnosis.

“This, as a parent is what you hear, ‘you can hug your kid for the last time in the next nine to 12 months.’ How do you even stomach that,” said Ryan Agnew, Aspen’s father. “Right now, is the time to get her doing everything she can, because I don’t know where she is going to be three months from now.”

Four-year-old Aspen currently undergoes radiation treatment.

“She would lead the way. She’d hold the nurses’ hands, climb up on the table herself,” Ryan said. "Kids in this situation are the toughest people you will ever meet."

The Agnew family wants others to know about this disease so more funding and time can be devoted to research for a potential cure.

“Neil Armstrong’s daughter died from this in 1962. The outcome is the same after decades. Nothing has changed,” Ryan said. “If we don’t get funding for this, if we don’t get this figured out, there are going to be more families in front of this camera in years to come.”

Ryan and Allison are asking anyone who has the resources to donate to organizations that are dedicated to finding a breakthrough in the battle against DIPG.

Those include The Cure Starts Now and The Michael Mosier Foundation.

The Agnew family has a GoFundMe to help pay for Aspen’s enormous medical expenses.