ANN ARBOR, Mich. – It’s a story of heartbreak, hope, and a $1 million gift to help fast-track pediatric brain tumor research.
That money was donated to the Michigan Medicine Chad Carr Pediatric Brain Tumor Center and will be spread out over five years.
The donation was made in honor of three-year-old Yuvaan “Yuvi” Tiwari.
He was diagnosed with a diffuse midline glioma (DMG) brain tumor in December of 2020. Tiwari died seven months later.
He lived with his family in Atlanta, but they consulted University of Michigan Pediatric Neuro-Oncologist Dr. Carl Koschmann.
Parvati Tiwari, Yuvi’s mother, reflects on when her then two-year-old was diagnosed. “That time that he walked into the hospital was the last time he actually ever walked.”
She said the tumor was aggressive.
“Within 10 days of Yuvi’s diagnosis, his tumor had already grown 20%, and you know in a little head with a little brain, 20% is a lot,” Tiwari said.
She also mentioned medicine for his son was limited.
“A lot of the trials out there were not open to kids under three years old, and Yuvi was still under three at that time,” said Tiwari.
Koschmann said surgery was just not an option.
“Unfortunately, Diffuse Midline Glioma in children is incurable,” said Koschmann. “And the average survival depending on the location is somewhere around 12 to 18 months. When the tumor is in this location, surgeons aren’t able to remove it because it’s completely embedded in normal brain and it’s parts of the brain that we can’t remove.”
Tiwari and her husband felt they had to do something to help other children. The couple contacted Dr. Koschmann.
“My lab and a lot of other labs take promising drugs that are targeted to pediatric brain tumors and translate them from the lab into the clinic.
That process is slow, and it’s expensive,” Koschmann said. “When they lost Yuvi, they reached right back out and said, what can we do to make this better for future kids? And we told them the thing that we could do, but it was going to require a really large investment.”
The couple created the Yuvaan Tiwari Foundation in December 2021 and were able to raise $1 million, donating a lot of their own money.
“I mean, we all saw what can happen if the brightest minds come together, focused on one single problem over the last two years for COVID,” said Tiwari. “We made a lot of progress. And really, my question is, what could happen if we did the same thing for pediatric brain cancer?”
Koschmann said, “We need to really save the future Yuvis of the world, and the faster we can go, the faster we can help them.”
This medical research will help better treat multiple pediatric brain tumors as well as some brain tumors seen in adults.