AUSTIN, Texas — After their 4-year-old girl passed away, a family hopes the community will help raise awareness and funds to find a cure for a rare brain tumor.
Claire Hernandez was a fighter. In July 2019, she was diagnosed with a diffuse intrinsic pontine glioma or DIPG.
For eight months, she battled the tumor with her family, friends and thousands of people by her side, thanks to the hashtag #CourageousClaire.
"I mean, we really pushed to the end to make this the best of everything for her," said her dad, Rey Hernandez.
On Feb. 28, 2020, Claire Hernandez passed away.
Rey and his wife, April, believe that although Claire Hernandez's life came to an end, her journey is just beginning.
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"She's going to help us find a cure for DIPG," said April Hernandez.
Every year, between 150 to 300 patients are diagnosed with DIPG in the U.S., according to DIPG.org, and accounts for 25% of all childhood cancers.
Children with the disease may experience difficulty communicating, walking and controlling their bowels. They may also develop headaches and nausea.
"They say it's rare, but to us, it is not rare," Rey Hernandez said.
Throughout Claire Hernandez's treatment, the Hernandez family believed they could use their time and energy towards bringing attention to the disease, so they created #CourageousClaire.
To date, it has gained more than 2,000 members.
Shortly before Claire passed, the Hernandez family partnered with the Austin chapter of The Cure Starts Now, an organization aimed to fight all cancers.
As they became more involved, they realized how much funding childhood cancer received, and it left them shocked.
According to the Cure Starts Now, three to five times more money per patient is spent on adult cancer cases than pediatric cases.
While they hope to raise money towards research, April and Rey Hernandez want #CourageousClaire to become a branch of the organization that supports families going through a similar situation.
"The fact that we had such a huge support system here is what helped us through," April Hernandez explained. "We know if we can support any type of person, family member, sibling or friend, someone that is going through brain cancer or DIPG, we would love to be that support for them."
The Hernandez family asks that you share this story on social media to spread the word about DIPG. Visit DIPG.org or The Cure Starts Now website to make a donation or learn more about it.
Funeral video courtesy of Albert Wooten.
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