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Utah family in DC seeking help for daughter's rare brain tumor

Posted at 10:15 PM, Sep 25, 2021

A Utah family went to Washington, D.C. in hopes to find answers for their five-year-old daughter who has been diagnosed with a rare form of brain cancer.

Ryan and Allison Agnew made the trip fun, but the real reason to visit the nation’s capital is not for a vacation.

A group of families are gathered for a conference of sorts, with doctors and researchers looking into treating Diffuse Intrinsic Pontine Glioma (DIPG).

Aspen, the Agnews' five-year-old daughter, was diagnosed with DIPG last year.

READ: Utah family raises awareness as daughter battles rare cancer

“She lights up the room,” Ryan said. “She’s the kind of kid that you look at and know there’s just something about her, and I want to keep that light going.”

A year ago, Ryan said he didn’t even know if his daughter would live past 9 to 12 months.

“It’s a form of a malignant brain tumor. It’s cancerous, and so there’s no cure for it,” he said.

Doctors told the parents to go home and make memories with Aspen.

“When you don’t know about something, and you’re told you have nine months until the last time you hug your kid, I mean, how do you handle that kind of situation?” Ryan said. “You either shut down or fight it."

The Agnews decided to fight it.

The problem, though, is how little information the Agnews have been able to find out about DIPG.

“It’s not a well-known disease,” Ryan said.

The conference the Agnews attended in D.C. featured doctors and researchers specializing in the disease.

“We’re trying to get research and funding on a national level,” Ryan said.

The couple feels fortunate to have Aspen with them, while others attending the conference have already lost loved ones to DIPG.

The Agnews hope by raising awareness, they will catch the attention of lawmakers to help approve a bill to provide funding for research and special treatments.

"What the future holds, I don’t know," Ryan said. "I hope it holds a future for Aspen."