Tucson family raising awareness after 5-year-old girl dies from rare brain tumor

TUCSON (KGUN9-TV) In the last few weeks of her life, 5-year-old Gianna Hurtado asked her parents to make a pinky promise.

"We never told her that she was going to die or she had cancer," said Gianna's mom Lizette Hurtado. "We just said she had a bump on her head and we were doing everything we could to make it better."

"She asked us, 'Will you pinky promise me?' and we said, 'Pinky promise what?' 'Pinky promise that when I die, you guys won't cry,'" Lizette said. "So that really spoke to what a kindhearted little girl she was."    

Gianna loved Star Wars and baseball, including the Los Angeles Dodgers and Arizona Diamondbacks. Gianna even threw out the first pitch at a Tucson Saguaros game last June.

Lizette says this past year her family has had some good days and bad days. Those highs and lows were chronicled on the Facebook page Gianna the Warrior Princess - DIPG.

The page was created shortly after Gianna was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in May 2016. DIPG is an aggressive, inoperable brain tumor that usually impacts children. Around 300 kids in the U.S. are diagnosed each year.

Twenty states, including Arizona, recognize May 17th as DIPG Awareness Day, according to the Michael Mosier Defeat DIPG Foundation.

Before Gianna's diagnosis, Lizette had never heard of DIPG. Lizette noticed Gianna kept closing one eye when she watched TV. She was seeing double.

Experts say the tumor attacks the part of the brainstem that controls critical functions, like breathing and your heartbeat.

"We had no idea what we were dealing with. The first day we were told she had a brain tumor," Lizette said. "The next day we found out it was DIPG and it was terminal."

With no treatment available the only option for Gianna was costly trials. Thanks to countless fundraisers and donations from the community, Gianna traveled to other countries like Germany and Mexico for treatment. 

Lizette says that would not have been possible without the support from the community, and now the family wants to help those who helped them.

"Our hopes are by raising awareness there will be more advocates, the government will take notice, and with more funding there will be more research," Lizette said. 

While some days have been extremely difficult, Lizette says her family has learned to focus on the positives and have surrounded themselves with positive people. The Hurtados are in the process of starting a non-profit in honor of Gianna. The goal is to raise money for other families impacted by DIPG and for DIPG research.

Facebook has also been a huge help in getting connected to other families, Lizette said. 

"In our situation, connecting with these families was almost sometimes more useful then asking a doctor," Lizette said. 

If she ever had a question about certain symptoms, Lizette could ask another family on social media.

Gianna passed away on January 4, 2017. In a Facebook post, her family wrote, "At 13:28 today the Lord asked Gianna to use her little wings and fly into his arms."

The family's backyard garden at their home in southwest Tucson has become a permanent dedication to Gianna.

Gianna's father Joe says the theme is Hawaiian because Gianna loved Hawaii. The family got to take a trip to Hawaii thanks to the Make-A-Wish Foundation. Gianna was adamant about dancing with Lilo and Stitch from the Disney movie.

There is a sign in the garden that says "Ohana," which in Hawaiian culture means family. The Hurtados have another daughter who is 3-years-old.

The garden is place Gianna loved and is now a place for the family to remember their own warrior princess. 

"She was never afraid and she always worried about everybody else and not herself," Lizette said. 

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