ATLANTA — Having your child diagnosed with an incurable disease and dying is every parent’s nightmare.
One local family who had to live through that is now using their experience to push for more research and funding to fight childhood cancer.
“Our lives changed in the blink of an eye. We lost Yuvi in seven months,” Parvati Tiwari, the mother of Yuvi Tiwari, said.
Yuvi was not even 3 years old when he was diagnosed with a brain tumor, diffuse midline glioma. There’s no cure— as the tumor has a 0% survival rate.
“And so we were told to go home and make memories,” Tiwari said.
The family did. While Yuvi went through radiation treatment for his tumor, the family didn’t stop there.
“So you look, you look for any doctor that can give you some good news and you look for any trial that you’re eligible for,” Parvati Tiwari said.
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“We have many trials to offer, but still not enough,” pediatric oncologist Dr. Tobey MacDonald said.
MacDonald was Yuvi’s oncologist. He said that as Yuvi was under under 3, he was ineligible for most clinical trials.
This is something the Yuvaan Tiwari Foundation is looking to impact.
“The only way to drive action is if we can raise awareness,” Tiwari said.
In less than a year, the foundation started its cancer research after Yuvi’s death last summer and has already raised $1 million.
“It makes a big difference. We need all the help we can get,” Tiwari said.
It’s vital. Only 3% of all government cancer funding goes to pediatric oncology, and less than 1% to study tumors like Yuvi’s.
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In his 30-year career, MacDonald says the survival rate of Yuvi’s type of cancer has not budged by even a single percentage point. It is disheartening, yet an opportunity for growth.
“We are looking for groundbreaking research, innovative ideas that we can help support,” MacDonald said. “We need to step up our game. We need to go faster, harder, stronger.”
It is estimated that this year alone, more than 10,000 children aged 15 and younger will be diagnosed with cancer.
Fundraising by the grassroots, family and foundation is essential to supporting research moving forward.
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