The beach is a favorite getaway for many families. The sun, miles of sand and water offer a playground or a place to relax. Yuvi Tiwari and his two older brothers, Arjun and Akshay, loved the destination.
During the family vacation at Holmes Beach, FL in December 2020, parents Satya and Parvati Tiwari, noticed some physical changes in the right side of Yuvi’s body. The 2-year-old showed no signs of discomfort or slowing down, but upon returning home they took him to the pediatrician. With Christmas around the corner and not knowing if they could get an appointment with a neurologist, it was recommended that they go to the ER.
“We rushed to Children’s Scottish Rite Hospital where initial imaging showed a large mass in Yuvi’s brain,” said his mom Parvati. “Little did we know that as Yuvi walked into the ER that day, it would be the last time he ever walked on his own.”
The CT scan was followed by an MRI resulting in a biopsy revealing news no parent ever wishes to hear.
“The next morning they (doctors) said it’s diffuse midline glioma,” she said. “It’s very aggressive, fatal and no cure.”
According to the Mayo Clinic, “DMG is a rare tumor that typically occurs in young children and is fatal within a year.”
Surgery was not an option. “The brain was the tumor and the tumor was the brain. It was just all intertwined,” Yuvi’s mother stated.
In less than two weeks after the diagnosis, the tumor had increased by 20%. A rare mutation left Yuvi with radiation as the only option for treatment. The toddler underwent thirty fully sedated radiation therapy sessions followed by steroids.
Credit: contri
Credit: contri
The family spent the remaining time making memories and showering him with as much love as possible.
Credit: Contribute
Credit: Contribute
“In about the last three weeks he was in a deep sleep almost like in a coma. He could not respond to us, but I know in my heart he could hear us. Yuvi passed away resting peacefully in our arms at home on the afternoon of July 30, 2021.
“Through the whole journey he was graceful and brave,” she said. “It came out of nowhere and changed our lives forever. In just 7 short months, we watched our joyful and active little boy lose all of his abilities to a deadly cancer with less than a 1% survival rate.”
This past December, Yuvi’s parents launched the Yuvaan Tiwari Foundation in his memory.
“During the first few days in the hospital, I said to my husband ‘I don’t know why this is happening to us, and I tried to understand why but there is no why, but I said I do know that it means something and I have to do something about it’. That’s where that was born. I found purpose,” Parvati added. “Even in those last few days, I felt this strength and I feel like he left me behind with the strength to carry on and move the needle for this disease.
“DMG strikes 200-400 children in the United States each year and the protocols for treatment have remained unchanged for the last 60 years,” she stated. “Unfortunately, it only starts mattering when it happens to you. Pediatric cancer overall only receives like four percent of federal funding and the brain tumor gets just a fraction of that.”
Credit: contributed
Credit: contributed
Funding research to discover a cure for DMG and other incurable pediatric brain cancers is the main focus of the foundation’s mission.
“To date, we have committed $1.9M to accelerate research towards finding a cure and to bring promising new treatments to patients as quickly as possible. We want to get into it knowing that if the results are promising they can continue to focus and double down to get things done quicker. We want to be quick and nimble with the whole theme of acceleration,” said Parvati. “This is something that sets us apart in how we are thinking about this foundation.”
For more information, visit https://www.facebook.com/YuvaanTiwariFoundation or to donate, www.ytfoundation.org/donate
Each Sunday we write about a deserving person or charity events such as fun-runs, volunteer projects and other community gatherings that benefit a good cause. To submit a story for us to cover, send to ajc.doinggood@gmail.com.
